For more than a decade, Dr. KJ Seung has been working with Partners In Health to stem the spread of tuberculosis (TB), which kills more than 1 million people every year. From Peru to Lesotho, Seung, 43, has helped design, implement, and scale up programs that deliver effective treatment to patients with hard-to-treat, drug-resistant strains of TB.

In 2009, Seung began collaborating with the Eugene Bell Foundation to treat TB patients in North Korea. He has since visited the country seven times. While it's well documented that TB has long been a problem in the country, Seung believes that drug-resistant TB is much more widespread in North Korea than previously thought. Worse, there are few resources in the country available to treat it.

This week, Seung published a groundbreaking paper in PLOS Medicine that warns that until drug-resistant TB treatment is readily available in the country, the number of drug-resistant TB cases will continue to climb, imperiling the entire Korean peninsula.

In this exclusive interview, Seung explains the factors that are fueling North Korea's drug-resistant TB epidemic, why the situation is likely to get worse before it gets better, and the immense challenges North Korean health professionals encounter every day.
 

Can you explain your background in TB and how you began working in North Korea?

I've been working with Partners In Health (PIH) since 2001, when I finished my medical training. My first job at PIH was in Peru, where we were helping the government build a national multidrug-resistant TB (MDR-TB) treatment program. So I gained a lot of experience in how to treat MDR-TB in a resource-poor setting. 

In 2009, I met Dr. Stephen Linton, the director of the Eugene Bell Foundation. He had found quite a few North Korean patients with MDR-TB, and had begun to start treating these patients. He knew PIH had expertise in MDR-TB, and asked us for help in developing a program.

What's the focus of the Eugene Bell Foundation?

TB is a major public health problem in North Korea. The work of the Eugene Bell Foundation focuses on a subset of TB patients that are infected with a highly resistant strain of TB called "multidrug-resistant" (MDR). MDR-TB requires very expensive drugs that are not readily available in North Korea. Eugene Bell raises money to buy these drugs from small private donors—mostly churches, religious groups, and individuals. Each donor is connected to individual patients. Since MDR-TB treatment generally takes two years, this is a substantial commitment, both of time and money.

We visit North Korea twice a year to deliver MDR-TB drugs to each patient registered in the program. On each visit, we talk to every single patient to make sure they are still in the program. We also diagnose and enroll new MDR-TB patients on each visit. Right now we are enrolling about 500 patients every year. That seems like a lot, but it's not enough compared to the need.

In your new paper, you describe a vast network of TB sanatoria within North Korea. What are these like to work in?

It's very difficult to see large numbers of patients dying from a treatable infectious disease. I've treated MDR-TB in a lot of different countries, but the situation in North Korea is the worst I've ever seen. There are simply too many patients. At every sanatorium we visit, there are lines of patients who have failed multiple courses of treatment with regular TB drugs and are hoping to get into our treatment program.

It's important to realize that these sanatoria were not designed for MDR-TB patients. They were intended to be places away from urban areas where regular TB patients could recuperate for a short time while starting treatment and then go back home to their families. But they are increasingly filled with patients with drug-resistant TB who are taking regular TB drugs for the second, third, or fourth time.

Most of the patients have been suffering for years from MDR-TB without any access to effective treatment. Some are literally carried in from home on the backs of their relatives, barely able to breathe. Their illness is so advanced, I know many of them would die even if they were treated in the U.S., but we enroll them anyway. Everyone deserves a chance at life, even if it's small. We owe them that.

You write that, up until the publication of your article, "there has never been any clear scientific evidence that drug-resistant TB is a serious problem in North Korea." How is that possible?

It is true that this is the first time laboratory data from North Korean MDR-TB patients have been published in a scientific journal. But honestly, if you search the Internet, you'll see that Dr. Linton has been talking about this problem for years to anyone who would listen.

The Eugene Bell Foundation used to provide regular first-line TB drugs, but the North Korean doctors began telling him there were an increasing number of patients who did not respond to these drugs. The doctors suspected that these patients had drug-resistant TB, but they couldn't know for sure since there was no laboratory in North Korea that could test for drug resistance. So Dr. Linton collected sputum from some of these patients to test in South Korea, and it turned out the North Korean doctors were absolutely right.

A lot of the credit has to go to Dr. Linton. He's not a medical doctor, but just by listening to the North Korean doctors, he discovered a major epidemic. Sometimes the evidence is staring you in the face. You just have to listen to what people are telling you.

In our discussions with the North and South Korean governments, and with international organizations like the Global Fund, UNICEF, and the World Health Organization (WHO), we have been quite open that Eugene Bell has diagnosed a large number of patients with MDR-TB. We've also been open about the fact that there are many more MDR-TB patients we don't have the resources to treat.

There have been many news articles that discuss drug-resistant TB in North Korea. But none of this has led to any significant change in how TB is diagnosed and treated in North Korea. The only group treating significant numbers of MDR-TB patients in North Korea is Eugene Bell. Most importantly, the best-resourced program in the country continues to use an outdated TB control strategy that's going to make the problem worse. This has to change.

Can you elaborate on why it's an "outdated" strategy?

When I first started treating MDR-TB 13 years ago in Peru, there was real confusion in the international medical community about how to address this problem. A lot of people thought it was just too complicated for resource-limited settings, and we should only focus on drug-susceptible TB. The idea was that if we treated drug-susceptible TB really well, we wouldn't make any more drug-resistant TB. Then the drug-resistant TB patients would just die and that problem would go away.

The flaw with that strategy is that TB is an airborne infectious disease, so the MDR-TB strains spread. The only way to stop TB transmission is to treat it. There are now some countries where 20 percent of new patients—meaning patients who have never been diagnosed with TB before—are found to be infected with MDR-TB.

So the consensus in the international medical community today is that all TB, including drug-resistant TB, has to be treated correctly. This is the standard of care throughout the world and the strategy promoted by the WHO.

But it's not happening in North Korea, where patients don't get tested for drug resistance and the whole program is based on treating all TB patients with the same first-line drugs—a strategy the international community discarded more than a decade ago. And even if they were tested for drug resistance, it wouldn't matter because the proper medicines aren't available.

So drug-resistant TB patients in North Korea end up getting treated with inadequate regimens of first-line TB drugs. From a public health standpoint, this is very serious, because for TB, bad treatment is worse than no treatment at all. Bad treatment ends up just creating more drug resistance. Then you get stuck in a vicious cycle. Drug-resistant TB spreads to more people, they get treated with the same inadequate regimen of first-line drugs, and the strains become more resistant.

All parties, including the international organizations that support the North Korean national TB program, bear some responsibility for this. For example, all first-line TB drugs in North Korea are currently purchased through the support provided by the Global Fund. UNICEF and WHO are responsible for the implementation of this project and have a responsibility to make sure these drugs are being used on patients for whom they were intended.

What do you mean when you write, "international aid … has largely ignored the possibility that drug-resistant TB strains are widespread"?

Even though there is significant international aid to the North Korean TB control program, very little of it is going toward diagnosis or treatment of drug-resistant TB. It's really hard to understand why.

Certainly the lack of drug resistance survey data seems to be a major sticking point. But this is a common problem in other resource-limited countries, which often don't have a laboratory capable of diagnosing drug-resistant TB. For whatever reason, it seems like the international experts implementing the Global Fund project are simply not convinced there is much MDR-TB in North Korea, and they don't feel like anyone should be treating MDR-TB until a scientific survey can be done.

Let me tell you about a discussion I was having with someone at WHO. The WHO is the main technical lead on the Global Fund project. I told him the whole story about what it was like to visit the sanatoria, and that we were diagnosing a lot of MDR-TB. His reply was, "What do you mean, MDR-TB? The outcomes we're getting are great! How can there be much MDR-TB in North Korea?"

When you talk to North Korean TB doctors, however, you hear a very different story. They are very open about the fact that there are patients who aren't being cured with regular TB treatment, even when the patients are admitted to a TB facility and doctors are absolutely sure they were taking the drugs. And the North Korean doctors worry that the number of these patients is increasing.

So what does your research suggest about the prevalence of drug-resistant TB in North Korea?

We found that 87 percent of the patients we tested had MDR-TB. Now we’re not saying 87 percent of all North Korean TB patients have MDR-TB. We didn't do random testing. We were testing patients the North Korean doctors suspected of having MDR-TB. But certainly the results confirm the suspicions of the North Korean doctors.

I am quite sure the Eugene Bell program is only seeing a sliver of the total MDR-TB population in the country. Even at the sanatoria we visited, we didn't test all the patients suspected of having MDR-TB. We tested only the number of patients we had drugs to treat. And there are many more sanatoria we don't have time or money to visit. Wherever we've been asked to expand our program, we've seen the same problem. There are many patients who don't respond to regular TB drugs, and when we test them, they have MDR-TB.

According to your paper, the most urgent problem is the lack of access to second-line TB drugs that are needed to treat drug-resistant strains. What are the major barriers to access?

The treatment of MDR-TB requires very expensive second-line TB drugs. Keep in mind that treatment for regular TB requires a six-month course of treatment of four drugs. MDR-TB treatment requires a whole different set of drugs, drugs that were invented decades ago, but stopped being used because they were weak. So MDR-TB treatment is much longer, usually 24 months. And the drugs themselves are pretty noxious so patients have a lot of side effects from them.

The main barrier to access is the cost of the drugs themselves. This is a major problem throughout the world. If you had asked me this question five years ago, I would have said it was probably impossible for North Korean MDR-TB patients to get access to the treatment they need. But the picture has changed drastically with the entrance of the Global Fund. The Global Fund could completely change the way drug-resistant TB is treated in North Korea. The funds are there to treat many more MDR-TB patients than are currently being treated. But the international community needs to be convinced that drug-resistant TB is a serious public health problem.

In the U.S., we really only hear of North Korea through sound bites on nightly news. How has your perception of the country evolved throughout the course of your work there?

One of the nice things about being a doctor is that I get to ignore the nonsense on the nightly news. Patients are patients, no matter where you are.

To learn more about PIH's tuberculosis work around the world, click here. 

This essay from PIH's Stephanie Garry originally appeared in the Tampa Bay Times. 

The gleaming white hospital appears out of nowhere in the bustle of this impoverished city in the Central Plateau of Haiti.

It seems even more out of place when you consider what's inside: 300 beds — more than All Children's Hospital in St. Petersburg. Six operating rooms. A neonatal intensive care unit. A CT scanner, the only one available to the public in Haiti. Most important, patients. More than 10,000 have seen clinicians since the hospital opened this spring.

It's one of the few visible signs of progress since the 2010 earthquake leveled Port-au-Prince.

More than half of American households donated after the earthquake to help a poor country with bad luck. But for the most part, the grand plans of building back better have not materialized. The 1.5 million people living in tents after the earthquake are fewer, but many were forcibly evicted. A garment factory and a luxury hotel, both underwritten by aid, opened with fanfare. These milestones hardly amount to a resounding victory for the people of Haiti.

Against this disappointing effort, University Hospital stands out as a testament to how much can be accomplished in Haiti. It can teach us how to achieve rebuilding and development with effective aid that endures, and better deliver on the generosity of the American people.

The popular narrative would tell you the recovery fell short because Haiti is difficult, unstable, dangerous and corrupt. Just a few days after the quake, New York Times columnist David Brooks blamed Haiti's trouble on "progress-resistant cultural influences." It's a facile explanation of a complex place, but a lot of people found it convincing.

My experience has led me to believe something else. I lived in Port-au-Prince for nine months and now work in Boston at Partners In Health, the global health nonprofit that built L'hopital Universitaire de Mirebalais under the guidance of Brooksville native Dr. Paul Farmer. In my view, the problem lay not with the Haitians but the aid industry that came to their rescue.

The earthquake recovery was largely composed of nonprofit organizations that are more eager to please donors than the people they purport to serve. Too often, they pay lip service to working with communities while largely ignoring them in designing their programs. Many of the so-called experts on alleviating poverty had little experience in Haiti and no plans to stay long term.

Pragmatically, a human rights approach works better because it confronts difficult, interconnected problems with significant solutions, not small, cheap interventions.

I saw this firsthand during my time working for Fonkoze, an exceptional Haitian microfinance bank serving the rural poor. I attended an aid organization's workshop to create a website to help poor, rural people improve their lives with information — people who are mostly illiterate and lack access to electricity, computers and the Internet. I heard an American aid worker complaining that the luxury housing provided by her nonprofit employer didn't have enough style.

It seemed like so much money went to Haiti after the earthquake, but less than 1 percent of the $2.4 billion in immediate earthquake relief went directly to the government of Haiti.

In the longer-term recovery effort, the U.S. development agency USAID spent $1.15 billion, more than half going to American firms in the D.C. area and less than 1 percent to Haitian firms and nonprofits, according to the Center for Economic and Policy Research.

Haitians weren't in charge of the projects, but they shoulder the blame for failures. Their country is characterized as a black hole for aid.

If national systems are weak, diverting money and projects away from the government only worsens the problem. It isn't easy to work with a government that is chronically short of resources, but it's the only way to strengthen the public sector to ensure the rights of its citizens.

There are many problems with the way aid works, but at the root of it is how we view the poor and disadvantaged, and more broadly, any group of people we seek to serve.

Beneath the complexity of actors and projects, the core of the problem is a misinterpretation of poverty.

As well intentioned as they can be, both aid and charity take the subtle view that there is something inherently wrong with the people being served. Otherwise, the argument goes, why would they need our help?

In reality, disadvantaged people are systematically deprived of the basic rights that would enable them to rise out of poverty — food, clean water, decent sanitation, housing, jobs, health care and education. The ambitions of aid are often too small, focusing on modest, short-term interventions instead of the long, painstaking work of building systems to ensure rights, in partnership with the government and local institutions.

Partners In Health builds open-ended partnerships that don't end when the earthquake donations dry up, offering a greater chance at slow, lasting progress on entrenched problems of poverty and inequality.

In Haiti, this denial of rights is not innocent, but the result of centuries of international interference and oppression. A couple of recent examples: Just a decade ago, on claims that Haiti's government was interfering with the elections of eight senators, the United States blocked international loans to improve water and sanitation systems. In 2010, less than a year after the earthquake, a U.N. peacekeeping force inadvertently brought an epidemic of cholera to Haiti by dumping its sewage in a major river system. Cholera has since killed more than 8,000 people and sickened more than one in 20 Haitians.

Instead of fixating on personal failings of the people of Haiti, we should work with them to build systems that ensure access to education, health care and food. The rights-based approach guides us to imagine doing more than offering castoff goods and services — the XXL T-shirts or the expired medicines or the spring break service trips. Pragmatically, a human rights approach works better because it confronts difficult, interconnected problems with significant solutions, not small, cheap interventions like chlorine for purifying drinking water or transitional shelters that, by themselves, offer little hope of lasting change.

Partners In Health, along with its sister organization, Zanmi Lasante, works to improve the quality of care in the public health system, collaborating with Haitian communities and the government to train health care workers, develop new services and improve rundown facilities, including building top-quality infrastructure.

In the case of University Hospital, the Haitian government identified the need for a national teaching hospital after the earthquake, and Partners In Health/Zamni Lasante worked alongside the Haitian Ministry of Health to design and construct the $17 million facility, with the help of many in-kind donations. Through a public-private partnership, the government and Partners In Health/Zamni Lasante will contribute to operating costs, and management of the hospital will gradually transition to the government over the next 10 years.

Partners In Health builds open-ended partnerships that don't end when the earthquake donations dry up, offering a greater chance at slow, lasting progress on entrenched problems of poverty and inequality. We call this "accompaniment," to convey a shared journey.

Developing partnerships based on empathy and pragmatic solidarity — not pity or even sympathy — is the essential first step in serving people in need.

Early on May 23, nurses and doctors dressed in blue scrubs and prepared for University Hospital's first surgical case. The instruments were sterilized, positive air pressure minimized the risk of infection, and Haitian nurses provided anesthesia. Dozens of partners — corporations, generous donors of time and money, medical professionals, and Mirebalais housekeepers — had worked together to make this day a reality. It wouldn't have been possible without years of work to strengthen the health system in the Central Plateau, so that patients could be connected to care from their homes to the hospital.

The patient was a 60-year-old Haitian woman and mother of four, diagnosed with breast cancer by a Haitian doctor. A Haitian surgeon from Mirebalais and his American counterpart worked side by side in a fully equipped operating room to perform the mastectomy. As with all work at University Hospital, procedures like this serve two purposes — first, and most important, to heal the patient with a standard of care that compares to a top-quality teaching hospital anywhere else in the world, and second, to train Haitian medical professionals to provide that kind of care. With this operation, the Haitian woman has received new hope and a greater chance of living longer with a better quality of life.

In the United States, there would be no question that a woman with breast cancer receives care — including a mastectomy — to save her life, and health facilities provide it routinely. Yet development experts debate whether this care is worth the cost in low-income countries. Should we spend the money on and invest the time in systems, with the necessary infrastructure, equipment, supply chains and drugs, to treat complex cases like cancer?

The patients in need of care and their doctors always say yes. Our role is to support them.

University Hospital was built in less than three years, long enough for the majority of earthquake responders to come and go. It will remain, serving the people of Haiti long into the future, as a testament to how much can be accomplished when you view the people you seek to help as equal partners.

Stephanie Garry is a former Tampa Bay Times staff writer who served in the Peace Corps in the Dominican Republic from 2009 to 2011. In 2011, she worked for Fonkoze in Port-au-Prince, Haiti, before joining the Partners In Health staff in Boston. Views are her own.

When the first patients trickled into Hôpital Universitaire de Mirebalais (University Hospital) at the end of March, they triggered a cascade of seemingly banal computer tasks that represents one of the largest undertakings in the history of open-source electronic medical records (EMRs).

In the U.S. and other developed countries, hospitals invest millions of dollars on proprietary medical record systems that gather enormous volumes of data. Such hefty investments aren’t an option in the countries where Partners In Health works, and rarely is the necessary infrastructure in place. In Haiti and other PIH sites, clinics and hospitals have often relied on paper records, which can be difficult to manage and easily destroyed in a fire or flood.

In recent years, however, a global community of doctors, software developers, academics, and tech enthusiasts has come together with a single focus: Building and deploying EMRs that are open source, meaning anyone can use the application for free and modify the code to meet their needs. No patents, no licensing fees, just a collaborative effort. PIH was an early adopter. In 2004, we collaborated with the Regenstrief Institute to create OpenMRS, a formal community of individuals and organizations that contribute their coding expertise to a single open-source EMR platform. Nowadays, software developed under the OpenMRS banner is used in more than 40 countries. 

Our goals were simple yet audacious, given the status quo, Evan Waters, director of PIH’s medical informatics team, said.

But building an open-source EMR for University Hospital—a 300-bed teaching facility in central Haiti with seven different points of entry, a digital radiology suite, and the capacity to serve 500 outpatients per day—would be a “feat of epic proportions,” as Renee Orser, business analyst for PIH’s medical informatics team, said. It had to be highly intuitive for a staff with a wide range of computer literacy. Furthermore, as anyone from PIH’s Monitoring, Evaluation and Quality teams will tell you, collecting data is only useful if they can be extracted, analyzed, and put to work. 

Most implementations of EMRs in low-resource countries have focused on retrospective data collection for specific diseases—meaning the information would be collected on paper and then plugged into a computer. While these systems are helpful for evaluating programs, they don’t immediately improve individual patient care. For University Hospital, the team set out to build a true point-of-care EMR that not only improves data quality, but allows health care workers to be more efficient, and delivers real-time feedback. 

“Having this system in place has made a difference—it is showing people we are doing things differently here, in a more efficient way,” said Dr. Gregory Jerome, director of Monitoring, Evaluation and Quality at Zanmi Lasante, PIH’s Haitian sister organization.

Meeting of the Minds

Before a single line of code was written, the PIH informatics team and developers from Thoughtworks—a private software company that provided hundreds of hours of technical support—embarked on an extensive fact-finding mission. By interviewing Haitian nurses, doctors, and archivists who’d be using the EMR, analysts learned what would work and what wouldn’t. For instance, they learned that visual cues and icon-driven navigation worked better than text-heavy instructions. Little revelations such as these guided every step of the development. 

“Our goals were simple yet audacious, given the status quo,” Evan Waters, director of PIH’s medical informatics team, said. “We aimed to deploy a system that would, from day one, be capable of registering every patient in real-time, provide an easy way to look up the patient’s record as they moved about the hospital, and capture vitals, diagnosis, radiology, and surgery information across the entire hospital.”

To ensure the hospital had the necessary hardware for such a system, leading tech firm Hewlett Packard (HP) donated more than $1.5 million of equipment and flexible spending. “Clinical and clerical staff will be able to access this EMR quickly and reliably on 175 computer terminals located throughout the hospital thanks to HP’s donation,” Waters said. “This opens the possibility of collecting cross-sectional data that will allow PIH to improve individual patient care, better evaluate programs at the hospital, and improve reporting to donors and government partners in Haiti. It also allows clinicians to have access to X-rays from every computer terminal.”

Between August 2012 and March 2013, developers worked relentlessly to build an initial system that was robust and resilient. As tens of thousands of lines of code piled up, a sophisticated yet user-friendly EMR emerged. 

Six weeks before University Hospital opened its outpatient clinic, some of the biggest brains of the OpenMRS community hunkered down in PIH’s Boston office for a marathon of meetings. 

At one end of the table sat Darius Jazayeri of PIH and Paul Biondich of the Regenstrief Institute, among the earliest OpenMRS pioneers. At the other end sat Hamish Fraser, assistant professor of medicine at Harvard Medical School and founder of PIH’s informatics team. Laced in between were a dozen PIHers; a gang of Brazilian coders sent by ThoughtWorks; Pete Szolovits, head of the clinical decision-making group within MIT’s Computer Science and Artificial Intelligence Laboratory; Megan McGuire, an epidemiologist and health informatics coordinator at Médecins Sans Frontières; and Jonathan Teich, a physician from Brigham and Women’s Hospital and chief medical informatics officer at Elsevier. If there’s ever an OpenMRS Hall of Fame, it’s a safe bet that half this table will end up in the inaugural class. 

Over two days and gallons of coffee, these experts drilled down into the broader implications of the project and looked for ways to make University Hospital’s EMR a foundation for the future of OpenMRS. Everyone was acutely aware that a successful launch could provide a new framework for hospitals around the world working with constrained resources. 

Patients see the system with the plastic cards and bar codes, and they understand that we are finding a way to get better information that can help us improve the level of care, Jerome, the Haitian MEQ director, said.

At the end of the two days, Waters and his team displayed the latest iteration of the EMR and showed everyone exactly what the archivists, nurses, and doctors in Haiti would see on their computer screens. With each step—from capturing the patient’s vitals to ordering an X-ray to searching diagnostic codes—the intuitiveness of the interface never diminished. A collective head nod from those at the table approved of security features that protect patient privacy and similar safeguards. 

Before the presentation finished, a small machine in the back of the room spit out a plastic card with a unique identification code. Every patient who enters University Hospital gets one of these IDs, a small but durable manifestation of the EMR that links the individual to the hospital. 

Awash in Data 

By the end of June, more than 12,000 unique patients have been logged into the EMR and given an identification card. When a patient returns for care, the barcode on the ID is scanned, giving doctors and nurses near-instant access to the patient’s recent medical history. 

“Patients see the system with the plastic cards and bar codes, and they understand that we are finding a way to get better information that can help us improve the level of care,” Jerome, the Haitian MEQ director, said.

In its infancy, the EMR has helped Jerome’s team understand the ways patients are moving through the hospital, and why. Staff can monitor how crowded a certain department is and track patients as they’re transferred and discharged. “The EMR has given us the information we need to look at patient waiting times so that we can think about how to improve patient flow and keep satisfaction high,” Jerome said.

By utilizing routinely collected data, University Hospital is positioning itself to be a model for evidence-based health care in Haiti.

The more data the EMR collects, the better informed our decisions and programs will be. One long-term project is to map broad health trends in Haiti’s Central Plateau. Because we record each patient’s weight, height, and address, we’ll eventually be able to map body mass indexes on a village-by-village basis. Such maps can help identify nutritional deficits in certain areas, allowing us to go to patients most in need. 

“As we look to the future, we can take University Hospital as an example of an EMR system that is efficient, useful, and usable,” Jerome said. “The EMR gives us the chance to better manage information about our patients and better understand the profile of the diseases we’re treating. In the long run, this will help improve our decision-making across the whole network of Zanmi Lasante health facilities.”

Clinicians, nurses, and informaticians now meet regularly to review metrics gleaned from the EMR. By utilizing routinely collected data, University Hospital is positioning itself to be a model for evidence-based health care in Haiti. 

Generous support of OpenMRS by IDRC and the Rockefeller Foundation made this work at University Hospital possible.

This article originally appeared on the Dana-Faber Cancer Institute Insight Blog.

I recently returned from a three-month rotation as a nurse fellow at a comprehensive cancer center at Butaro Hospital in Rwanda, a tiny African country known as the “land of a thousand hills.” The hospital, built and operated by the Ministry of Health and Partners In Health, is located in a rural, mountainous area where most residents are farmers. Because most homes do not have running water, people fill up 5-gallon jugs at the local water spigot.

The new cancer center, which opened in July 2012, includes up to 34 beds and an outpatient clinic. An outpatient infusion center will open this summer.

Patients travel from across Rwanda and neighboring countries for their cancer care here, often taking public transportation (very crowded mini-buses) or walking, which may take several hours. It is not uncommon for patients to travel a full day to get to the hospital and another to get back home. They bring along a caregiver who shares a hospital bed and provides personal care such as bathing and feeding.

Last year, Dana-Farber introduced a fellowship that allows one nurse at a time to spend a three-month rotation here, teaching local nursing staff how to care for cancer patients. The three nurses who came before me trained their Rwandan colleagues in many aspects of oncology nursing, such as mixing chemotherapy drugs, administering chemotherapy accurately and safely, and building knowledge about cancer and the side effects of chemotherapy.

When I arrived last spring, I helped introduce better systems for managing a growing volume of patients. Paper charts are now better organized. There is a calendar for recording appointments and admissions, a dose calculation sheet so a second nurse can double-check chemotherapy doses, and there are worksheets to organize the day’s activities.

While I was there, the Partners In Health team was implementing an electronic medical record (EMR) in the cancer unit. The EMR contains pre-built chemotherapy order templates that do all the calculations needed, reducing the chance for human error. We are also building a report that summarizes, for the pharmacy, all the chemotherapy needed for the day, thereby eliminating the need for the nurse to hand-write every drug needed. The EMR will also replace our handwritten appointment book by generating patient lists.

As the last DFCI nurse fellow during the first year of the program, I will give a written assessment to the Rwandan nurses to evaluate their knowledge base at this point in time. Using the assessments and each our own experiences, the three other nurse fellows and I will develop a road map for year two of the fellowship.

Lori Buswell is currently a VP in Nursing and Clinical Services overseeing Dana-Farber’s satellite centers and network affiliates. She also oversees staff who support clinical and revenue cycle systems for the Dana-Farber enterprise such as scheduling systems, electronic medical records and order entry systems. She recently became involved in global health and is a member of the Dana-Farber Center for Global Cancer Medicine. In that role, she works closely with Partners In Health and helps to develop, support and build in-country capacity for oncology programs in Haiti and Rwanda.  

There is much to celebrate as we mark the first anniversary this week of the Butaro Cancer Center of Excellence in Rwanda. Dr. Neo Tapela, director of noncommunicable diseases at Partners In Health, shared the following letter with her team at the cancer center:

Dear Noncommunicable Disease/Oncology Team,

One year ago today, we joined hands with Rwanda’s Ministry of Health, Partners In Health, Dana-Farber/Brigham and Women's Cancer Center, and Jeff Gordon Children’s Foundation in the inauguration of the Butaro Cancer Center of Excellence by President Bill Clinton and Honorable Minister Agnes Binagwaho as the first rural national referral center for cancer care in the region.

It's hard to believe that only one year has gone by given the tremendous achievements and challenges we've overcome.  In this short period of time, together we have: 

• Developed national protocols for cancer care that have been endorsed
• Strengthened national referral processes for cancer patients
• Developed baseline training curriculum in cancer diagnosis and treatment, with so far 87 nurses and 46 doctors trained
• Implemented other trainings, including in breast cancer surgical care, core needle biopsy, and cervical cancer screening, as well as for lab technicians at eight health facilities, to improve biopsy specimen preparation and referral
• Expanded Butaro’s pathology lab capacity, including set-up of telepathology for off-site interpretation by experts abroad while further capacity of Rwandan pathology specialists progresses
• Expanded consultation partnerships with Rwanda- and Boston-based specialists, including Rwanda-based specialist outreach to Butaro
• Graciously hosted many visitors, including collaborators who come to learn and are inspired by the work done, and potential donors who can potentially add to resources
• Implemented an electronic medical record (EMR) system to support clinical care and follow-up of patients, programmatic monitoring, and descriptive research
• Established a noncommunicable diseases (NCD) writing group to build NCD research capacity and share our experiences academically to expand service delivery
• Provided care for over 1,000 new patients at Butaro, and continued care overall of over 1,500 cancer patients at Butaro and Rwinkwavu Hospitals
• Continued to expand capacity for patient care, including additional staffing, training, and the soon-to-be opened Butaro Ambulatory Cancer Center (Infusion Center)

All of the above would not be possible without the compassion, resilient spirit, and tireless dedication to patient care of this team.  We truly owe this incredible success to all of you!

Murakoze cyane kubw'itange twakwigiyeho!!

Proudly,
Neo

Neo Tapela, MD MPH
Director of NCDs, Partners In Health, Rwanda
Special Advisor to Director General of Clinical Services, MOH, Rwanda
Associate Physician, Brigham & Women’s Hospital, USA
 

This week marks the one-year anniversary of the Butaro Cancer Center of Excellence, located in northern Rwanda. Built by Partners In Health and the Rwandan Ministry of Health, the center opened in July 2012 and has registered more than 1,000 patients for treatment so far. Here is the story of one of those patients.

Three-year-old Fabrice was a bright-eyed, energetic boy when he began getting fevers daily. Worried, his mother brought him to a local traditional healer near their home on the outskirts of Kigali, Rwanda, who advised that they return home, find a cockroach, and return with it as part of a treatment.

But Fabrice’s symptoms quickly worsened, and his mother’s concerns deepened. She brought him to the nearest health center, where he was transferred to a hospital in Kigali. Fabrice was treated for malaria, but his fever persisted, and he began to have blood in his urine and abdominal swelling. An ultrasound eventually showed a large mass in his kidney. Finally, the physicians transferred Fabrice to a second hospital in Kigali, where he was diagnosed with Wilms’ tumor.

This disease can be cured with a relatively simple chemotherapy regimen and surgical removal of the tumor—survival rates exceed 90 percent in the United States and Europe. But without treatment, the prognosis is dismal. And in many countries where resources are limited, such as Rwanda, children don’t survive this treatable disease.

Fabrice’s mother struggled with her son’s diagnosis. She’d never met someone with cancer, and from what she’d heard, the diagnosis meant Fabrice would surely die.

"No more going to the hospital or health center,” she thought. “I should just wait for him to die." But when doctors transferred Fabrice to Butaro Cancer Center for chemotherapy, she decided it was worth trying.

"It was very difficult when I first got [to Butaro] because he was very sick and I was very scared," Fabrice’s mother says. His condition seemed increasingly dire each day, and she was in an unfamiliar place, away from her husband and her work.

Fortunately, there was no better facility in the region Fabrice and his mother could have gone to. Since its opening in July 2012, the cancer center has registered more than 1,000 patients. Their ailments range from breast cancer to acute lymphoblastic leukemia to Kaposi's sarcoma. Patients from every district of Rwanda, as well as several other countries, have been cared for by expert staff.

After a short while at Butaro, Fabrice’s mother connected with other parents whose children were sick. She even saw other children with Wilms’ tumor—many of whom recovered.

But periods of hopefulness were tempered with frightening moments as Fabrice became sick from his second round of chemotherapy. One of the scariest moments came when he was transferred back to Kigali for the surgical removal of his tumor. She worried he wouldn’t survive the operation.

Yet Fabrice recovered well and returned to Butaro for post-operative chemotherapy. Over the many months he and his mother visited the cancer center for chemotherapy, they connected with families dealing with cancer, receiving treatment, and improving. Her views on cancer evolved, and her hope for the future grew.

A year ago she would have said cancer meant death, but today she tells her friends and family a new, more hopeful story. She tries to fight the stigma that surrounds cancer in her community by explaining that cancer is not communicable like other diseases such as HIV and tuberculosis, and that it can be cured if proper medical care is delivered.

Fabrice has now completed chemotherapy.  He shows no signs of recurrent disease and is once again smiling and playful. Fabrice serves as a hopeful example that cancer does not need to go untreated in the poorest communities, and that cancer is not and should never be an automatic death sentence for patients in even the remotest corners of Rwanda.

PIH's work at the Butaro Cancer Center is supported by the Jeff Gordon Children’s Foundation.

For Dr. Ruth Damuse, the opening of Hôpital Universitaire de Mirebalais (University Hospital) in Haiti is like looking into a mirror.

The Haitian physician and her team have worked to provide top-quality care to poor breast cancer patients since 2011, when she helped start a weekly clinic in Cange, Haiti, with PIH sister organization Zanmi Lasante. Now, the new hospital in which she works reflects that high standard of excellence.

On May 23, Damuse’s breast cancer patient was the first to receive surgery in one of University Hospital’s state-of-the-art operating rooms. A Haitian surgeon and an American surgeon worked side-by-side to perform the lifesaving mastectomy. Since her operation, more than 150 surgeries have been performed at University Hospital.

“It’s like a dream, because we have worked in Haiti for a long time, and we have done a lot, but we haven’t had something like University Hospital,” Damuse said. “It’s good for the patients to have their surgery in such a beautiful and organized space.”

The 60-year-old patient, Isemelie Bazard, described it as a miracle.

"Madame Damuse is someone who really understands people,” said Bazard, a mother of four who lives in Port-au-Prince. “It's hard to believe that in a hospital this big there are doctors who understand people. They listened to me, they did surgery for me, and they really looked after me. Even my child was able to be here with me. For me this is tremendous support."

In March, Bazard came to the PIH/ZL hospital in Cange to seek care for a lump in her left breast. A biopsy was taken in Cange, and PIH academic partner Brigham and Women’s Hospital diagnosed the cancer. Then, physicians from the Dana-Farber Cancer Institute in Boston worked with Damuse to develop a treatment plan. PIH/ZL's oncology work in Haiti is supported by the Avon Foundation and the LIVESTRONG Foundation.

The patient will continue to receive follow-up care and chemotherapy at University Hospital, which will now be the center of cancer care for PIH/ZL.

The Haitian surgeon who worked on the case, Dr. Michelson Padovany, was born in Mirebalais, but had been working at another ZL facility in the Central Plateau before relocating to University Hospital after it opened in March. When the surgery team told him he had been chosen to perform the first operation at the new hospital, he trembled with excitement.

“It was an historic event,” Padovany said. “The hospital means a lot for Mirebalais, for the Central Plateau, and for the country.”

While the procedure itself was fairly routine for the ZL clinicians—they’ve performed surgeries for many years in Cange—the experience of working in University Hospital’s operating room was something entirely new.

University Hospital has six operating rooms, two of which have opened to handle the first phase of surgeries. They’re fully equipped: A sterile processing department cleans surgical instruments after operations, sterilizes them, and stores them for future operations, and special surgical lamps light any procedures while staying cool and minimizing shadows cast by surgeons’ hands. The hospital’s ventilation system keeps the operating rooms cool and creates positive air pressure, which blocks airborne bacteria from entering the room and reduces the risk of infection. The operating rooms are nearly twice the size of those in Cange, which allow them to accommodate surgical residents on rotation.

Successful surgeries depend on many other parts of the hospital to be equipped and operational—the lab and radiology for diagnosis; housekeeping to clean and cook for inpatients; anesthesiology; and a specially trained nursing staff, which received instruction by Operation Smile nurses to care for patients pre- and post-operation.

“All the different departments stepped up their game to make sure they were ready for the opening of surgery. It’s a collaborative effort, a lot of little pieces coming together and functioning as one,” said Dr. Ainhoa Costas, who performed the surgery with Padovany.

Costas, a Harvard Medical School global surgery fellow from Puerto Rico, has been working in the PIH/ZL surgery program in Haiti for the last two years. For the last few months, surgical residents from Harvard Medical School’s program in global surgery and social change have been traveling to University Hospital to join her in setting up the operating rooms.

“It was so amazing to see all of that finally coming to bear fruit,” said Costas, who completes her fellowship this summer.

Phil Garrity, 25, joined the Partners In Health staff in Boston in 2011 after volunteering with Socios En Salud, PIH’s sister organization in Peru. As program coordinator on the Monitoring, Evaluation, and Quality (MEQ) team, he helps measure and evaluate PIH programs to improve quality of care and demonstrate the success of the PIH model.

In August 2012, Garrity was unexpectedly diagnosed with osteosarcoma, an aggressive and rare bone cancer, and began an eight-month treatment program that included surgery and chemotherapy. As he transformed from a servant of the sick to a patient himself, he learned to value an under-appreciated aspect of service, which he terms “non-doing.”

Garrity wrote the following reflection, which he read aloud to Partners In Health staff on May 15, 2013, the day his medical team declared him cancer-free, as a message of thanks for their accompaniment throughout his journey.

Over the past two years volunteering and working for PIH, I’ve been lucky enough to take part in a movement to integrate data-driven quality improvement into our operations. Much of my team’s work involves distilling an often nebulous web of people and activities down into a conceptual framework that reflects what is actually happening on the ground. We map out work protocols and data flows, we select process and outcome indicators, we create systems to collect, analyze, and visualize the information—all to gauge three simple but key aspects of our programs: What are we doing? How well are we doing it? How can we make it better?

But without drowning in the details, I’ll synthesize all this by saying that much of our work and my role here at PIH continues to place particular emphasis (as it rightly should) on an intrinsic part of serving the poor: the doing. My mind is often focused on what protocols our staff are implementing, how many home visits our community health workers have completed this month, how often our HIV patients have been seen in clinic. You may preoccupy yourself with such questions as how many letters have been sent, web pages designed, meetings scheduled, donors courted, supplies procured, services delivered, money raised. And, logically, we can’t know what’s being done unless we measure it. Because, as one MEQ site leader once remarked, “If it’s not documented, it didn’t happen.”

But this is where we reach a dilemma. To simply measure the value and quality of our work by the numbers, the performance levels, or the concrete investments of time, energy, and resources seems to neglect another invaluable, but often hidden, dimension of this work: the non-doing. This concept may baffle those of us more accustomed to the rational side of life, for so much of our culture values and rewards the practical and pragmatic, the logical and analytical. The idea of “non-doing” is easily equated to “not doing anything”—nothing more than a futile exercise and utter waste of time. But allow me to reflect on a few personal experiences that have transformed this irrational concept into a mysterious truth, one that I’ve come to find resonates less with my mind and perhaps more with my spirit.

I’m drawn back to my time volunteering with a local nonprofit in Cusco, Peru, in the months preceding my internship with Socios En Salud. A few days each week, I’d help out at a nursing home for the destitute run by an order of kind yet stern nuns who led by rigid example and hardly ever by word. Feigning competence, I’d be handed a pot and ladle and I would feed the ancianos; handed a bottle of ointment, I’d rub it on their itchy legs; handed a pair of clippers, I’d trim their overgrown toenails—all of this often done in total silence, even lathering and shaving the old men’s faces, eight of whom were blind. Their quiet gratitude for something so simple and seemingly trivial astounded me then and perhaps more so today as I look back and wonder what it all meant.

At the time, I was beginning to delve into questions that would serve me well in Lima and later in Boston: what were we really trying to achieve here? What were our goals and how close or far were we from reaching them? The long hours of just sitting with these old people, hearing their stories, tending to them in what small ways I could—it seemed nice enough, but was it doing anything of real value, at least as I understood it then? My mind would drift to hypotheticals somewhere beyond the confines of that small, quiet refuge. Shouldn’t I be saving children from starvation, protecting refugees from mortal danger, pulling this country out of poverty and into the 21st century? After all, I had come here to rescue people from their lot, to save helpless victims from suffering and injustice. This place seemed so stagnant, these people so quiet and inert. What was I doing here?

I felt that I had failed to be the protector, the helper, the healer—not for an entire country, but even for this one feeble man.

Early one morning, we found a frail old man had fallen and broken his hip in the middle of the night. His groans and whimpers suggested he had been without pain relief for hours, and he needed to get to the hospital. We placed him on a wooden board, loaded him into the church’s van, and were off. I rode alongside him, anxious yet keenly aware of my inability to do much of anything for the poor man. Once there, it pained me to see him relegated to a corner of a busy emergency room where he simply had to wait his turn to be seen. Hours went by and I sat near him, wallowing in the helplessness that I now shared with him. What could I do? I felt that I had failed to be the protector, the helper, the healer—not for an entire country, but even for this one feeble man.

Our driver, a seasoned caretaker from the nursing home, came in with some bread and juice for the man, who silently accepted the gift and began nibbling away, partly concealed underneath the sheets draped over his stretcher. I sat and watched him intently with a mixture of exhaustion and pity as he littered himself with crumbs and peered out at me, eyes gleaming. It was then that something miraculous happened: the old man broke his bread roll in half and stretched out his hand toward mine. An acute sense of surprise and embarrassment came over me, and at first I refused his offer, insisting that he eat it, for surely he needed it more than I. But my feeble attempts to decline the gift were wholeheartedly dismissed as he pushed the bread into my hand, motioning me to eat. And so I did, me looking bewildered and humbled, he looking quite pleased to share his meal with a near stranger.

Moments like these continue to deepen my understanding of what it means to embrace the non-doing. It’s come to mean being brave enough to disarm myself, to set aside my intellectual firepower and self-protective shields, and to enter into another’s chaos—not to do for them, but to simply be with them. It takes courage to sit in that silence, often empty-handed, and humbly accept the lesson that that feeble man so beautifully demonstrated that day: that I am as much the patient as he is the healer. That he is not a broken machine idly waiting to be fixed by the “non-broken,” the “privileged,” the “fortunate” among us. I believe that those we intend to serve have bread to offer us every day—humble reminders that we are co-creators in the promotion of life, gentle invitations to discard our pity and crawl down into the pit with another. In these precious moments, we’re able to see our shared vulnerability as humans and to simply open ourselves to it, perhaps without much of any real hope of fixing anything in that moment or hour or day.

Beyond all of the things we do to act in service for the poor—delivering medical supplies, building health systems, strengthening human capacity—I’ve come to believe that there is something far more powerful in simply being in service with those in need. We might consider this other dimension of our work a ministry of presence—one that underlies and encapsulates all of our tangible efforts to console, to palliate, to rebuild in the face of disease and distress. I would argue that this is our strategic advantage among those in the vast arena of development work: that we do not walk away when things appear impractical, unfeasible, or futile. We stay, to perhaps accept defeat again and again, if only to show the world that the people we serve are worth more than the steps they may gain or lose on their path to a more dignified life. That we ourselves are worth more than our successes or failures on our path to building a more just world.

Our collective attempts to concretize an abstract world—to understand the mechanics of material privation, to design interventions and harness resources that achieve a positive and quantifiable effect on the lives of the poor—can create the illusion that fixing is our only aim.

I see more clearly now how all my dissecting questions obscured the real meaning in those quiet gestures at the nursing home. Our collective attempts to concretize an abstract world—to understand the mechanics of material privation, to design interventions and harness resources that achieve a positive and quantifiable effect on the lives of the poor—can create the illusion that fixing is our only aim, that we must constantly be doing if we are to succeed. We can believe that if we can’t show progress, then none has been made. And so we easily fall into the trap of making systems and machines out of countries, communities, and individuals—broken devices that only we can fix. 

But real solidarity, true compassion, as I’ve come to discover through lived experience these past eight months, is grounded in something far deeper than our displays of technical prowess or standard notions of progress. It evades our attempts to capture its value with metrics and analytics, and perhaps for good reason. I believe it’s revealed through an earnest and humble kind of love, one that neither feigns strength nor fears weakness. It can simply sit with another in the silence, not feeling frantic to fill it with words or deeds. It has the courage to look into the darkness of our finitude—both of our bodies and of our ambitions—which we all face, not just the sick. It can trust in the value of non-doing, of simply being present.

And so I say all of this as a hopeful reminder for each of us to restore a balance between what we do and who we are, being careful to not forget the unconditional value of the latter. Because at our core we are radical love, we are goodness, we are justice—a core that cannot be marred or diluted by all the apathy, cynicism, and resistance the world might throw at it, a world of practicality that tries to convince us that our efforts to transform it will inevitably fall short, that our gestures of good will are in vain, that we have not done enough today. It is from this core of being that we are able to infuse what we do with the goodness that we are—to make possible real healing, both visible and invisible, that often can’t be measured.

I thank all of you for helping me to live out this truth and for being who you are, far beyond what you do.      
 

This article originally appeared in the BMJ Quality Blog.

By: Dr. Junior Bazile and Henry Peter Makungwa of PIH/APZU

In 2007, Abwenzi Pa Za Umoyo (APZU), the sister organization of Partners In Health (PIH) in Malawi, began a community health worker program to support HIV care in the remote, rural district of Neno. The program was designed to complement and be integrated with a Ministry of Health national HIV care program. The addition of community health workers allows HIV care and treatment to reach Malawians living in remote areas where geography makes it exceedingly difficult for them to access care.

In this setting, community health workers provide a critical link between the community and the local health facility. They visit patients between medical appointments, ensuring medications are taken as prescribed, answering questions, and monitoring for medical and social complications that might hinder a patient’s successful treatment. They also refer and accompany patients to a health facility when necessary.

During their regular visits, community health workers (CHW) collect data on a paper household chart, developed by PIH/APZU and the Ministry of Health. Data about all members of the community are collected on the chart, aggregated by site supervisors, and entered into a database. The resulting data give PIH/APZU a rich window into the lives of the people we serve. The information allows managers and supervisors to identify people suffering from inadequate housing, food shortages, a lack of potable water, or to find communities where a lack of information and cultural barriers are preventing pregnant women from attending antenatal appointments.

But these uses of the household chart are only possible with quality data. Challenges with the quality of CHW-collected data have been well documented in settings of poverty. In Neno, informal assessments had already indicated that household chart data were of poor quality, which prevented PIH/APZU from using the information. Since CHWs knew the data they were collecting were not being used or even analyzed, they tended not to pay attention to securing complete and correct data. In addition, the staff responsible for aggregating household chart data saw the task as an unwelcome addition to their existing workloads, which led to inconsistent data quality checks and further reduced the usability of the data.

In order to assess the quality of household chart data, PIH partnered with researchers at Harvard’s Department of Global Health and Social Medicine to apply Lot Quality Assurance Sampling (LQAS). LQAS is a classification technique originally used in manufacturing to evaluate the quality of, for example, a batch (or “lot”) of T-shirts that a factory produces. LQAS allows the manufacturer to take a sample of T-shirts and determine if the quality of the lot is acceptable. PIH uses the same approach with household chart data—staff examine only a few household charts from a health center (the “lot”) and determine whether the summary data quality from dozens of CHWs is statistically good enough to produce reliable results.

In July 2011 we did a baseline LQAS assessment of data quality, using five “clusters” each made up of several different health posts. The results were sobering. Four out of five clusters had poor CHW data quality. From those results, we knew intervention was needed, and which health posts needed it most. We also knew where data quality was acceptable, with one cluster acting as a positive example where we could identify what was working well and extract best practices.

Based on this initial assessment, we implemented several measures to improve data quality. Responsibility for data aggregation was given to the site supervisors at each health center, who were eager to help with the improvement effort. Other staff members were assigned the specific role of implementing quality improvement measures based on the results of the LQAS assessments, which would ensure that patients got the services they need.

The resulting improvement was overwhelming. Three months after the baseline assessment that showed 80% of clusters with poor quality, we had turned the proportion on its head. Now, 80% of clusters showed good data quality. And by March 2012, all five clusters showed good data quality. The data that were previously so fraught with quality issues could now be used to improve the quality services at PIH/APZU facilities.

By using LQAS to identify data quality issues, and then intervening to improve data quality, we made the household chart a usable, practical tool for monitoring and improving the health of our patients. By accurately measuring trends in the community and tailoring our services to meet the needs of the rural poor, PIH/APZU is better positioned to appropriately address the burden of disease. These services break our patients out of the cycle of poverty and disease that in some cases has plagued them for generations.

Dr. Junior Bazile is a Haitian physician who received a medical degree in Haiti and obtained a master's degree in public health from the University of Alabama at Birmingham under a Fulbright Scholarship. After several years working in Haiti and in Burundi, he is now working with Partners In Health in Malawi as the clinical director and community health director.

Henry Peter Makungwa is Malawian, and is currently the manager of the Village Health Worker program, overseeing all activities related to the household chart. He has been extensively trained in agriculture extension and holds a certificate in that field. After many years working with NGOs in the field, he joined PIH/APZU in 2008 and is one of the pioneers of the household chart program in Malawi.

Learn more: Malawi Household Chart
 

Lesotho is among the most dangerous countries for pregnant women. From conception to delivery, daunting terrain, sparse medical facilities, and cultural barriers make it difficult to access proper health care. In the Mountain Kingdom, for every 100,000 live births, 1,155 women die from pregnancy-related complications, giving Lesotho one of the highest maternal mortality ratios in the world, according to recent estimates from Measure DHS, a USAID-funded  project that collects health data in 90 countries.

But Malineo Sethobane is helping change that. The 50-year-old mother of five began working for Partners In Health/Lesotho in 2010 as a maternal health worker (MHW) in the village of Lipeneng. Because she’s from the community she serves, Sethobane is uniquely situated to connect with women early in their pregnancy. She accompanies them over the following months to make sure they get antenatal care and deliver their children in a safe environment with trained medical staff at the ready.

In 2009, PIH/L piloted its Maternal Mortality Reduction Program (MMRP) in the village of Bobete. “I remember when we started the pilot in Bobete, we wondered ‘why aren’t women coming in for antenatal care?’ We were told it was cultural. The assumption was that women don’t want to come to a facility,” recalled Dr. Hind Satti, Lesotho country director for PIH.

It didn’t take long for the program to engender a drastic shift in how pregnant women seek and obtain health care. The year before the MMRP launched at Bobete Health Center, only 46 women delivered at the facility. In the second year of the program, 216 women delivered at Bobete Health Center.

In the years that followed, PIH/L bolstered its efforts in Bobete, and then expanded to seven other sites.

“Now it’s very acceptable for women to come to give birth in the facilities,” said Satti. “The main reason: we put in good infrastructure, we treat them with dignity, and we provide high-quality services. There had been a lack of trust … it wasn’t because women didn’t want to come.”

Earning that trust wasn’t easy. At every step of the way, Satti and her team were devising sustainable solutions to deeply ingrained problems. They met with village chiefs to build consensus that women shouldn't die while giving birth. From there, they recruited men and women and traditional birth assistants—trusted in the community, but in need of formal training—to work as MHWs. Every MHW passes through a rigorous training program tailored specifically for Lesotho. 

Nohana Clinic Site Director Meriam Sesiu Kopeli holds a healthy baby boy. The mother was accompanied to the clinic by PIH/L maternal health worker Malineo Sethobane. Photo: Rebecca E. Rollins/Partners In Health

To overcome transportation difficulties (imagine walking hours through steep mountain paths at night; now imagine doing it while in labor), PIH/L and community members built maternal waiting houses at each clinic. A few weeks before a patient's due date, she’s accompanied by her MWH to one of these waiting houses.  Once there, the patient can relax for the remainder of her pregnancy, knowing that she’s only a few yards from trained medical professionals.

Sethobane and the hundreds of other MHWs are the backbone of PIH/L’s MMRP.  They form an essential link between the community and the health center, referring patients for care as needed and making sure the health centers respond  to the community’s needs.

At Bobete, where the program launched, the number of facility-based deliveries has increased 370 percent since 2009.

On average, MHWs are assigned 75 women. They go door-to-door each month, meeting with every client. If a woman suspects she might be pregnant, the MHW arranges a trip to the clinic for a pregnancy test. The earlier a pregnancy is confirmed, the more effective antenatal care is. MHWs are also trained to educate their communities on HIV testing and family planning.

“MMRP is an intervention that empowers women in rural areas. We’re encouraging them to be productive members of society—not to sit back,” Satti says. “Addressing maternal mortality is a gate for us to address all aspects of women’s health—empowering women, which impacts their children’s and families’ health.”

Two mothers and their infants waiting at Bobete Clinic for postnatal appointments. Photo: Rebecca E. Rollins/Partners In Health

Not only is the program empowering, it’s extraordinarily effective. Last year, more than 1,500 women delivered babies in a health care setting. PIH/L recorded more than 4,500 prenatal care visits, and conducted more than 1,700 HIV tests. At Bobete, where the program launched, the number of facility-based deliveries has increased 370 percent since 2009.

In the few years Sethobane has been working as an MHW, she’s accompanied more than 11 mothers from the village to the health center and made hundreds of home visits. She says she’s learned that commitment to the individual patient is vital, and that simple steps can improve the health of an entire family.

Despite these gains, Lesotho remains a challenging environment to give birth. Satti is confident, however, that the country is heading in the right direction.

“We are not going to accept any maternal deaths. It takes commitment and teamwork to make this happen. We all started with that spirit—that there is no reason a woman should die during pregnancy or giving birth,” she says. “Midwives, drivers all share that spirit. Everybody is ready.”
 

Josefat was born with myelomeningocele, the most serious type of spina bifida, which can damage parts of the spinal cord and the surrounding nerves. To his parents, Josefat looked like he was born with a large tumor on his back. By the time he was 2 years old, his parents had saved up enough money for the surgery and the eight-hour bus ride to a hospital in Tapachula, Mexico.

Josefat fared well after the surgery, and it seemed as though the operation was successful. But two weeks later, he woke up blind with cephalic fluid—the fluid around the brain—leaking from the spot where he had been operated on. Scared for their child, Josefat’s parents brought him to the local Partners In Health/Compañeros En Salud clinic, whose work is supported by Vermont-based Green Mountain Coffee Roasters. There, social service year physician Dr. Abelardo Vidaurreta immediately called the surgeon. “Something went wrong,” Dr. Vidaurreta remembers telling the surgeon, urging him to readmit Josefat immediately. 

“We didn’t know what to do,” Erlinda recounted. “Where were we going to get the money to take him to Tuxtla again?

Once again the Lopez family packed up a few things, left their five girls under the care of a neighbor, and headed back to Tapachula. The surgeon, however, asked for 20,000 pesos (about $2,000) for a second surgery, a sum the family couldn’t afford.  Josefat’s father called Dr. Vidaurreta. After talking to the social worker in the hospital, Dr. Vidaurreta arranged to transfer Josefat to Tuxtla, another large city, where he could be supported by PIH/CES directors Dr. Hugo Flores and Dr. Jafet Arrieta.

Under their supervision, Josefat had another surgery and the Lopez’s were sent home after a short hospital stay. While Josefat didn’t regain his sight, the second surgery remedied the other complications that lingered from the original surgery.

Unfortunately, Josefat’s struggles persisted. A few months after the surgery, the boy’s back became infected. Dr. Arrieta picked up the boy and his family in a big black truck with “Compañeros En Salud” printed on the side and drove them once again to the hospital in Tuxtla. “We didn’t know what to do,” Erlinda recounted. “Where were we going to get the money to take him to Tuxtla again? We’re poor, and my daughters were saying, ‘We don’t want you to go.’ But thank God the [CES] doctors came.”

The family spent three months in the hospital with their little boy before a healthy Josefat was once again sent home, this time for good.

PIH/CES has continued to work with Josefat, delivering primary care and making sure he recovers fully. During a recent checkup, Josefat and his mother roamed the clinic yard where they encountered a mango tree. “I’m going to climb!” cried Josefat, and with a little assistance, he scrambled up into the tree’s branches. “He’s good now,” Erlinda said. “He plays, walks, talks, eats, drinks. I have so much gratitude.”

Emma Goodstein has been collaborating with the PIH/CES team in Chiapas, Mexico since June 2012. Originally from Portland, Oregon, she graduated from Wesleyan University in 2010 with a degree in history and has since worked in various positions in health care in Portland and New York City. She will be entering Emory School of Medicine this fall.

Partners In Health never does anything alone. To deliver high-quality health care to those most in need, we forge lasting collaborations with governments, universities, private companies, and even other nongovernmental organizations. Working across such a wide spectrum creates remarkable opportunities and outstanding results.

Take for instance last week, when PIH and our Rwandan sister organization Inshuti Mu Buzima were lucky enough to participate in the Harvard-Rwanda Global Health Delivery Field Course, a program that drew on the expertise of more than 40 people from Rwanda and the United States. With support from the Rwandan Ministry of Health and Harvard University, the course delved into case studies, explored epidemiological trends, and discussed the political and economic factors behind successful health systems.

“Rwanda is a theater of something extraordinary,” PIH co-founder Dr. Paul Farmer said during his opening remarks for the course. “This is a country that can teach a lot to other settings in the world, including the United States. Everything you see here has been done through collaboration and taking on problems.”

Rwanda, as Farmer and colleagues detailed in a recent BMJ article, radically transformed its health sector in the wake of the 1994 genocide. As a result, malaria deaths plummeted, access to lifesaving HIV medications soared, and far fewer children are dying needless deaths. The Global Health Delivery Field Course provided a forum to contextualize these gains and strategize ways to build on them.

“This course is very good and practical,” said Vincent Rusanganwa, medical education and research expert at the Ministry of Health of Rwanda. “We see what are the good practices in other countries and then we can improve our thinking.”

Others echoed that sentiment. “The course is very interesting. It’s an occasion to meet different people from different institutions and countries,” said Anita Ahayo, prevention and voluntary counseling and testing specialist at the Rwanda Biomedical Center. “For us planners, we don’t have such opportunities to build capacity.”

Over the course of the week, speakers from the Rwandan MOH, including Minister Agnes Binagwaho, PIH, and Harvard Medical School delivered lectures and fielded questions from students who encounter new challenges in the field every day.

Dr. Marie Aimee, director of the noncommunicable disease division at the Rwanda Biomedical Center, said the course provided invaluable lessons that she’ll be able to apply as the Center scales up cancer services and other NCD-related programs.

And while the focus was on Rwanda, everyone who participated walked away with new insights.

“This is a very different kind of class. It’s about working together and taking on problems," Farmer said. “I’ve learned a lot more reading these cases and teaching this class than I have in a long, long time.”

Effective care for most illnesses requires understanding the social conditions of one’s patients, writes Paul Farmer in The Upstream Doctors: Medical Innovators Track Sickness to its Source, a new TED book by Dr. Rishi Manchanda. 

At the end of almost a decade spent in teaching hospitals and clinics, most (we hope all) physicians have honed their clinical acumen by focusing on the care of the patient who is right in front of them. Perhaps this is as it should be: as patients, we don’t want our doctors (or nurses or social workers) distracted by “outside” considerations such as the suffering or concerns of other patients not there in the exam room or, heaven forfend, by abstractions such as the extra-personal social forces that place people in harm’s way. We want the doctor focused on us, by bringing expertise and attention to our specific “illness episode” and even to our minor aches and pains. That’s what we want: laser-like focus, to use another term from the medical profession, on our own “chief complaint.”

Or do we? What if most of our aches and pains and many of our serious ailments come largely from those outside forces and abstractions? What if we want to prevent disease or complications of it by altering our risk of poor outcomes (not just death, but predictable or unforeseen complications of the chronic conditions and growing infirmity that most of us will one day endure)? What if we acknowledge that we live not only in bodies but in families, homes (mostly), neighborhoods, and cities? What if our lives outside of the clinic or hospital are often difficult and even, for some people and at some times, almost unendurable? What if our clinical diagnoses are not our chief complaints?

Dr. Rishi Manchanda’s TED Book addresses all of these questions with clarity and vision and humility. His vision is informed by long experience, illuminated by the experience of his patients, and solidly buttressed by a great deal of data. The book’s title is borrowed from a well-known parable. Three friends come upon a terrifying scene: as a broad and swift river approaches a waterfall, they see floundering children being swept by in the current, heading towards the cataract. The three friends do the right thing: they jump in and save the drowning children. But the rescuers’ horror is compounded when more kids keep coming down the river. Finally, one of the three starts swimming away from the struggling children. Over the objections of her fellow Samaritans, panicked as they continue their heroic rescues, she swims upstream “to figure out what or who is throwing these kids in the water.” 

Understanding more about the causes of the causes will help make medicine matter, help make it better, in part because it forces us to be better listeners.

It’s not that Manchanda is arguing in these pages that we don’t need to save all those already swept into perilous waters. It’s rather, he argues, that we need to divert some of our attention and resources—perhaps more than a third of them—to addressing the root causes of that peril. In other words, we need our physicians to be technically competent, excellent listeners, and able to understand pathogenesis—especially when sickness is not caused, or caused solely, by a microbe or an accident or a readily identified genetic mutation. Make no mistake: Most sickness in this world, whether in South Central Los Angeles or in my workplaces of Boston and rural Haiti, is caused not by a single event or pathological process but by many of them in concert. And most of these causes are to be found far upstream of the etiologies we are taught to seek in medical school and in teaching hospitals.

These “causes of the causes” are largely social and environmental ones, as laid out in the clear prose of Dr. Manchanda’s book. Even when etiology is more downstream, effective care for most illness requires understanding the social conditions of one’s patients. Take, for example, the case of Veronica, one of his patients from South Central Los Angeles. In clinical parlance and practice, the story would go something like this: Veronica, 33 years old, presented with recurrent and worsening headaches; these were accompanied by fatigue and malaise. The headaches interfered increasingly with her “activities of daily living.” She sought care for her symptoms in an emergency room, where she was “worked-up” for recurrent headache, given medication for pain, and told to return if she did not get better. She returned twice, still in pain, and subsequent work-up included a CT scan, routine blood tests, and a lumbar puncture. These revealed nothing. One doctor, we learn, suggested that Veronica “was exaggerating her pain simply to get narcotics.” The emergency room staff, probably frustrated, referred her back to a primary-care doctor, which is where she started in the first place. Still her headaches persisted, she took more sick days, and felt she wasn’t doing enough for her young children; she worried, in fact, about losing her job. One of these three ER visits alone cost more than her monthly rent.

Study after study, in city after city, has shown us that it is very expensive to give mediocre medical care to poor or near-poor people living in a rich country.

When Veronica came to his clinic, an “upstreamist” approach led Dr. Manchanda and his colleagues to do a different kind of diagnostic work-up and to propose a different kind of treatment plan. With little probing, Veronica, still in pain and by now exasperated, allowed that she lived in an apartment that was damp, infested by roaches, and full of mold; she couldn’t afford to move and the landlord wasn’t about to repair the leaky plumbing of her small, ground-floor apartment. The diagnosis, Manchanda thought, was migraine headache triggered by chronic allergies and complicated by sinus congestion. Allergens in the damp apartment probably also accounted for her son’s frightening asthma flares, another source of anxiety for Veronica.

So far so good: any competent physician or nurse ought to be able to make the diagnosis. Most could do so without advanced medical training; many mothers could, certainly. But the upstreamist approach is not merely to inquire about the causes of the causes; it also calls for addressing them. The clinic in which Dr. Manchanda practiced as an upstreamist works with community health workers and tenants’ rights groups which, in essence, extend the clinic right into their patients’ homes (if they have them) and lives. The medical staff connected Veronica to a community health worker, who could visit her at home and help make sure she was able to obtain and take the medications likely to give her short-term relief from her symptoms. That’s one of the things that community health workers do—or would do if only we had enough of them around. As for her housing conditions, another partnership came into play: a tenants’ rights advocacy group, long active in Veronica’s neighborhood, petitioned the landlord—this time with a doctor’s note in hand—to make the improvements that were always part of his contractual agreements and were in keeping with local building codes. Veronica got better, as did her son. She also stopped using the emergency room for primary care; from then on, most of her care occurred right in her home or in a nearby clinic termed a “patient-centered home.”

It’s not that Dr. Manchanda and his colleagues were not involved in her ongoing care but rather that, in an upstreamist vision, Dr. Manchanda’s colleagues necessarily include community health workers and advocacy groups and citizens concerned to promote healthy neighborhoods. This approach works with, not on, patients. Together, Veronica and her new partners in care, from clinic staff to community health workers and other advocates, improved the quality of that care, increased the effectiveness of her physician, and lessened her utilization of high-cost but ultimately ineffective, for her, emergency services. Working together, this team also improved the quality of Veronica’s housing, lessened her son’s affliction, and thereby broke a vicious cycle all physicians see far too often: study after study, in city after city, has shown us that it is very expensive to give mediocre medical care to poor or near-poor people living in a rich country. One might even argue that this upstream approach improved the quality of her doctor’s life, too.

Decreased costs and better outcomes for all concerned: if that’s not a formula for value, I don’t know what is. But a better understanding of efficiency, effectiveness, and value in health care is not the only reason to adopt upstreamist approaches or to read a book about them. Understanding more about the causes of the causes will help make medicine matter, help make it better, in part because it forces us to be better listeners. Bertolt Brecht’s haunting verse, “A Worker’s Speech to a Doctor,” published the better part of a century ago, tells a story all too similar to Veronica’s:

When we come to you
Our rags are torn off us
And you listen all over our naked body.
As to the cause of our illness
One glance at our rags would
Tell you more. It is the same cause that wears out
Our bodies and our clothes.
The pain in our shoulder comes
You say, from the damp; and this is also the reason
For the stain on the wall of our flat.
So tell us:
Where does the damp come from?

It can be argued, and often is, that controlling the dampness and mold in Veronica’s flat is not the job of a physician. But to argue that such understanding of causality is not the job of an effective health care system is wrong-headed for a host of clinical, moral, and economic reasons. Explaining these reasons is the primary task of Manchanda’s book, just as it is the primary task of social medicine and its many component disciplines. Addressing the causes and consequences is the primary task of all practitioners, whether based in hospitals or clinics or communities. Seeing them addressed, upstream and downstream, is very often the primary concern of our patients.

These are not new insights, as Brecht’s poem suggests, but as our nation’s health care costs continue to spiral out of control without leading to the expected and wished-for results—looking at the usual indicators of population health, the United States lags far behind most wealthy countries, even though we spend more than any other—these insights are more urgently needed than ever. In Dr. Manchanda’s words, our current standard of care isn’t working well for those who need it most. It’s not that modern medicine isn’t living up to our hopes for new diagnostic and therapeutic tools, although we could, if his prescriptions were heeded, always use more of those. It’s rather that medicine, as it is now practiced, has sharply defined boundaries. These borders keep us from understanding ill health and from doing our jobs well. All the technological fixes in the world are not going to repair our broken health system, not if helping the Veronicas of our world matter to those who now debate its future.

Continue reading the full essay.

Dr. Paul Farmer, physician and anthropologist, is chief strategist and co-founder of Partners In Health, Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. He also serves as U.N. Special Adviser to the Secretary-General on Community-based Medicine and Lessons from Haiti. Dr. Farmer has written extensively on health, human rights, and the consequences of social inequality. His most recent book is To Repair the World: Paul Farmer Speaks to the Next Generation.

It was early morning in northern Rwanda, and the sun was just beginning to burn away the mist blanketing the yellow-green patchwork hills outside the hospital windows. I was scheduled to give a brief training on resuscitation to the nurses working in the neonatal unit of a rural, government hospital where I volunteer part of my time through the international organization Partners In Health. Five or six nurses gathered around the table where I had a low-tech, plastic simulation baby for them to practice their CPR technique. Less than 10 words into my presentation, though, another nurse rushed in to interrupt the training. 

“Doctor, there is a baby… I think she is not breathing. Can we do reanimation?” he asked, using the French term for resuscitation, or CPR.

Training abandoned, the other nurses and I followed him to the patient, a five-day old girl who had been transferred to the hospital from a nearby health center. Apparently the child had been well after birth, but had developed fever and difficulty breathing the night before. I grabbed a stethoscope and listened for lung sounds and heart sounds—there were none. The baby lay still on the neonatal resuscitation table, bathed in the weak sunlight streaking in through the windows. Her limbs were cool and limp, and blood dripped from her nose and mouth. My heart sunk. Who knew how long it had been since the baby stopped breathing? It could have been any point in the hour-long trip along the bumpy dirt road that snaked around the hills between the health center and hospital.

Clinical instinct told me that this baby was already dead, and wasn’t coming back. But the nurses were all looking at me expectantly, and I decided that we had to try. I felt my heart start to beat a little faster, as it does at the start of every resuscitation I have ever participated in since medical school, but my voice was steady as I handed the nurse closest to the baby’s head the mask and bag we had been about to use for the training and instructed him to place it over the child’s nose and mouth and begin delivering breaths. I sent a second nurse to grab the oxygen concentrator machine and attach it to the bag the first nurse was holding. I had a third nurse place her two fingers in the center of the child’s small sternum and start delivering chest compressions as I counted out the time in French. Yet a fourth nurse went to grab a small device to check the child’s sugar while a fifth placed an intravenous catheter. On the surface I was calmly running through the resuscitation algorithm, making sure the nurses stayed on track, but deep down I was already mourning the small baby I had just met, and wondering how the young mother standing just a few feet away would react when we finally gave up the effort.

About ten or fifteen minutes later, while everyone else was caught up in the rhythm of the resuscitation, one of the nurses spoke up. “Doctor, I think we should stop now.” I nodded my head, thinking to myself that we had dragged this on for long enough. I was about to open my mouth to say so when the nurse added: “I think the child has a pulse now.”

At first I thought I had misunderstood him, or that he was mistaken. I felt for the small divot where the baby’s thigh met her pelvis, and sure enough there was a strong pulse. We stopped CPR and I listened to the chest with my stethoscope… a heart beat, regular and fast! A moment later I could hear breath sounds that were crackly wet but at least audible on both sides. The baby had a fever, and her stomach was distended, and there was bloody goo coming from the anus – all signs of a severe infection called necrotizing enterocolitis, or NEC – but she was alive! There were large smiles on the nurses’ faces as we gave the baby oxygen, started antibiotics, put down a tube to decompress the stomach, and, once she was stabilized, finally got back to my lecture.

It would certainly feel good to take credit for saving this child’s life, but I can’t. First, the child is quite ill, and may not survive to leave the hospital. But even if she does, it will have been chance that saved her life. Random chance that she had stopped breathing just as she reached the hospital instead of minutes or hours before; chance that I happened to be in the neonatal unit at that moment and happened to have years of experience in resuscitation as an emergency physician; chance that the entire neonatal unit staff had been there for the training, providing plenty of able hands; chance that all the many pieces of equipment we needed were available and functioning that morning, as is certainly not always the case in this setting. Had all of these random events not lined up this morning like ducks in a row, the child would surely have died.

I can’t take credit for saving the girl’s life today without taking responsibility for the man’s death last week, so I choose to do neither. Instead, I prefer to simply keep working to improve the system as a whole.

I know this, because I’ve also seen the other side of this life-or-death coin toss many times before. Just last week, while rounding with a Rwandan doctor on the inpatient ward at another hospital, one of the patients passed away while we were chatting with another man just a few beds down from him. The man who died had serious heart disease, but had been doing well when we saw him the prior day. We had begun seeing patients that morning on the far side of the large ward, three long rows of evenly lined beds away, and by the time we got to his row around noon he was already dead. Without the loud, shrill beeps and flashing of colored numbers that punctuate hospital life back home, we hadn’t noticed as his lungs filled with fluid, his breathing got faster, and the oxygen level in his blood began to fall. Nor had the patients and family members in the beds surrounding him wanted to interrupt us to let us know. We were two beds away when we finally noticed him, but by that time it was too late. Had we started our rounds on his side of the room that morning, he would have been one of the first patients seen, and we probably would have been able to intervene with some simple medications to stave off death. But by random chance, we hadn’t. 

I can’t take credit for saving the girl’s life today without taking responsibility for the man’s death last week, so I choose to do neither. Instead, I prefer to simply keep working to improve the system as a whole: training more nurses and doctors, increasing the efficiency and effectiveness of care through improved triage and other basic structures, pushing for steady supplies of basic drugs and equipment, and conducting research into new methods to improve the delivery of emergency care in poor settings such as this. In the United States, we talk of a “Swiss cheese” model in healthcare. There are so many redundancies in our own system, that for a patient to suffer a bad and unexpected outcome, all of the holes must be lined up just perfectly. In most low-income countries, though, the healthcare system is like a single slice of Swiss cheese, with plenty of holes for patients to fall through. The greatest challenge in global health development remains adding enough layers of cheese—enough people, enough supplies, and enough organization—so that when a baby’s life is saved it becomes the expected outcome, and chance no longer gets to take any of the credit.

This article originally appeared in the Epi Network. 

Adam Levine is an Assistant Professor of Emergency Medicine and Co-Director of the Global Emergency Medicine Fellowship at Brown University. He currently serves as the Clinical Advisor for Emergency and Trauma Care for Partners In Health/Inshuti Mu Buzima and as a member of the Emergency Response Team for International Medical Corps. His research focuses on improving the delivery of acute care in low-income countries and during humanitarian emergencies. The views expressed in this blog are his alone and do not necessarily represent the views of any of the organizations mentioned above.

This article originally appeared in the BWH Bulletin.

On one of her first visits to Navajo Nation as a resident in the Division of Global Health Equity, Sara Selig, MD, went to the home of a man in his late 20s with uncontrolled diabetes. A young father, one of his legs had already been amputated due to the disease, and Selig was concerned he was developing even more complications.

The Community Outreach & Patient Empowerment Program, or COPE for short, was started five years ago to help high-risk people with diabetes living in two areas of Navajo Nation, which is the largest tribe in the U.S. Today, COPE has expanded to cover the entire Navajo Nation and works across the spectrum of chronic diseases.

COPE partners with the Navajo Nation to improve the health of high-risk patients through interventions such as providing educational materials, including flip charts, to use with patients and training community health workers to help patients set and achieve goals.

COPE held a first-of-its-kind symposium this spring in Window Rock, Ariz., the capital of Navajo Nation. The event drew approximately 150 participants, from clinic-based physicians and nurses to community health workers and even drivers, who often act as translators for health workers making home visits. The faculty consisted of both local and international experts, many of whom were affiliated with COPE's partner organizations of BWH, the Indian Health Service, Partners In Health and Harvard University.

"We wanted to highlight what is going on in and around Navajo Nation, as well as bring in the global perspective," said Selig, now a faculty member in the Division of Global Health Equity and associate director of COPE. "By connecting attendees to the larger national and international scene, we cross-pollinate with outside experts and let them know that the problems on Navajo Nation are also faced in other parts of the world."

Most of COPE's funding comes from the non-profit Rx Foundation, and the symposium highlighted the urgent need for more interventions and investments.

"We are so fortunate to have people willing to donate their time and expertise, and this work would not happen without them," said Selig. "But many of these initiatives will also require funding to get off the ground, and we don't know where that's going to come from."

With roughly 20 percent of people in Navajo Nation living with diabetes, one of the highest rates anywhere in the world, COPE's work is greatly needed. Howard Hiatt, MD, associate chief of the Division of Global Health Equity, was inspired to co-found COPE after visiting Navajo Nation in 2009.

"There's surely no group of people to whom we, as Americans, owe more than to Native Americans," he said. "And that debt can't be paid, but at least addressed, by a program like COPE."

Our supporters are dear to us. Whether it’s an individual who donates a few bucks each month, a group of cyclists that rides across the country to raise funds, or someone who signs a petition to make our collective voice louder and more powerful, we’re perpetually indebted to everyone who’s contributed to making health a human right.

One supporter who’s captured our imagination and continually inspires us is Erin Manuel. The 11-year-old hails from a small town in the mountains of North Carolina.  She learned of PIH at the end of 2009, after her mom read Tracy Kidder’s Mountains Beyond Mountains. Two months later, the earthquake in Haiti happened. Manuel, 7 years old at the time, gave her mom the $3.08 she had saved and asked that it be donated to PIH for Haiti.

But she wasn’t satisfied with the size of her donation. So she decided to make a few bookmarks to sell at a nearby farmers market. “My first goal was $10,” she said during a recent visit to PIH’s Boston office. “Then it was $100, then $1,000.”

Manuel became a regular fixture at the farmers market—and a business-savvy entrepreneur who let market research guide her decisions. She began tracking which bookmark designs sold well (ones that feature turtles, butterflies, birds, and cats) and which didn’t. She pitched them as “great stocking stuffers” when the holidays rolled around, and sold a batch to a nearby bookstore. Altogether, she’s designed about 16 different types of bookmarks, three of which have been retired due to lackluster sales, Manuel says. 

A few of Manuel's best-selling bookmarks. Image: The Manuel family. 

With ambitions simmering and Haiti’s recovery on her mind, Manuel decided to diversify her offerings. When she was given a camera for her 9th birthday, she began shooting beautiful nature scenes, including a plump toad perched on a railroad tie, and turning them into greeting cards. Nowadays, she has about 20 different cards for sale, all of which make for great souvenirs and postcards for those passing through North Carolina. Most recently, she’s taken up the violin. If it’s slow at the farmers market, she’s not afraid to busk the day away in hopes that a passerby will drop a buck or two in her violin case.

While Manuel, who’s entering the sixth grade this fall, says she’ll “always have a connection to PIH,” she doesn’t picture herself going into the field of medicine. Rather, she wants to be an astrophysicist or theoretical physicist.

After three years and countless bookmarks sold, Manuel has raised more than $5,000 for PIH. “I had no idea it would happen,” she says. “Now [my goal] is $10,000.”

Her fundraising efforts have been a transformative experience. “She’s such an introvert that I was a bit worried she’d freeze up when we got to the farmers market,” Erin’s mother says. “But when people have a cause they’re working toward, they can do amazing things.”

How do we define quality and value in global health? It is essential that health programs be comprehensive, integrated, and monitored so they can effectively address social and economic barriers to care for the poor.  A paper published in The Lancet from World Bank President Jim Yong Kim, PIH Co-founder Paul Farmer, and world-renowned Harvard economist Michael Porter outlines a vision for redefining global health care delivery.

Click here to read The Lancet article in full. 

It takes Marita Banda*, a 45-year-old mother who lives in a remote village in Neno, Malawi, about five hours to walk to the nearest hospital. Because of that, most of her eight children have been born at home with little medical supervision. But when it came time to deliver the newest addition to the family this past April, Banda and her family decided to go to Lisungwi Hospital, a Partners In Health-supported facility with a full maternity ward.

The decision may have saved her life.

While in transit, Banda went into labor and had to deliver the baby in the car. During the delivery, however, Banda sensed something was wrong. She began to bleed steadily and couldn’t remove the placenta. By the time Banda and her newborn son made it to the hospital, she had lost a significant amount of blood.

The staff at Lisungwi Hospital ushered Banda into the maternity ward, where trained medical staff treated the retained placenta and gave her a blood transfusion. While resting the next morning with her newborn, Banda had time to reflect on her health, her future, and her children.  “All I could think when I delivered was that I am too old to have more children,” she recalled. “It is becoming dangerous.”

Banda discussed her concerns with hospital staff, who provided information on various family planning options. She decided to have a tubal ligation before she left the hospital. She also received help paying for the car that took her to the hospital, which at the equivalent of $15 was more than the family of farmers could afford.

Banda’s story is not uncommon in Malawi, where one in every 36 women is expected to die during pregnancy or childbirth at some point in her lifetime. One of the most critical precautions a pregnant woman can take is to deliver her baby at a health facility. Not only does Lisungwi Hospital provide a safe space for women across lower Neno to deliver their babies, staff members provide important antenatal and postnatal care, as well as family planning options.

“I am grateful for the medical people who treated me,” Banda said. “My baby is doing fine and is strong, and I am feeling very comfortable.”

Victoria Smith is external relations coordinator for Abwenzi Pa Za Umoyo, the sister site of Partners In Health in Malawi.

*The patient's name has been changed.

This article originally appeared June 1, 2013, on ASCO Daily News.

Paul Farmer, MD, PhD—physician, medical anthropologist, and an ardent champion for health care for people living in poverty—will share his insights on global health and cancer care at this morning’s Opening Session (9:30 AM–12:00 PM, North Hall B1). Dr. Farmer is the Kolokotrones University professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School; chief of the Division of Global Health Equity at Brigham and Women's Hospital; and the United Nations special adviser to the Secretary-General on Community-Based Medicine and Lessons from Haiti. An expert in infectious diseases and a leader in the movement for global health equity, Dr. Farmer is committed to delivering high-quality health care to those who most need it and who cannot afford it—a commitment that started early and has never waned.

Dr. Paul Farmer

As an undergraduate at Duke University, Dr. Farmer used prize money from an essay competition to visit Haiti, where he witnessed firsthand how the poorest of the poor lived in the country’s Central Plateau region. He proved to be an unconventional medical student, using many of his holidays and vacations to bring medicines to the poor in Cange, an extremely poor squatter settlement in the region, and returning to Harvard for labs and exams. By the time he received his medical degree and doctorate in anthropology in 1990, Dr. Farmer had seen and treated more diseases associated with poverty than many U.S. doctors might see in their lifetimes. In Cange, Dr. Farmer realized that delivering effective health care to the poor cannot be achieved solely by improving access to drugs. He helped establish a first line of defense, which included disease prevention programs, a protected water supply, and improved sanitation infrastructure, and helped train members of the local community as community health workers to help care for patients in their homes, accompany them to the clinic when necessary, and overcome barriers to accessing treatment.

In 1987, at age 27, and even before he received his medical degree, Dr. Farmer cofounded Partners In Health (PIH) and its sister organization in Haiti, Zanmi Lasante (ZL), which treats all patients who arrive at the clinic and works with partners to build schools, water and sanitation systems, and houses for the poor. In Cange, Dr. Farmer and his colleagues at ZL particularly concentrated their efforts on treating tuberculosis (TB) and other infectious diseases. Today, PIH/ZL operates clinics and hospitals at 12 sites across Haiti’s Central Plateau and lower Artibonite, including a new national teaching hospital in Mirebalais, built and operated in partnership with the government of Haiti. ZL is the largest nongovernment health provider in Haiti.

PIH/ZL started as a two-room office, one-doctor clinic in Cange, working closely with a growing network of community health workers. Today, it has sprouted into an international organization that currently has 14,000 employees and manages dozens of hospitals and clinics across the world; a process which evolved in small steps at first, followed by giant strides later.

Dr. Farmer and PIH became leaders in global health when they entered the debate on the ethics of treating AIDS in settings like Haiti and sub-Saharan Africa. Despite the prevailing international opinion, PIH provided incontrovertible proof that AIDS can be effectively treated among the poorest of the poor. PIH worked with pharmaceutical companies, the International Dispensary Association, the Clinton Health Access Initiative, and other partners to increase access to antiretroviral treatment for HIV. In Haiti, ZL's HIV Equity Initiative was one of the world’s first projects to use antiretroviral therapy to treat people with HIV in resource-limited areas.

In the mid-1990s, PIH's sister organization in Peru, Socios En Salud, provided a model for treating multidrug-resistant TB in Carabayllo, a shantytown on the outskirts of Lima. Socios En Salud’s successful treatment and cure of TB and MDR TB in difficult settings changed international protocols and standards of care. This was a turning point for PIH and for the global health equity movement. In 2001, the Open Society Institute invited PIH to take over primary responsibility for clinical care at a TB project in Tomsk, Siberia.

In these efforts to treat HIV and TB, PIH showed that the accepted standard of care, which treated patients in the developing world differently than those elsewhere, was inadequate and grossly unfair. Dr. Farmer and PIH faced the daunting task of delivering expensive and complex interventions in settings of poverty. Delivering services to all who need them, “not selling services to those who cannot afford them,” was fundamental. Dr. Farmer believed in the mantra “better to ask forgiveness than permission,” and was able to connect the resources of Boston academic medical centers to rural communities in Haiti and elsewhere, helping to ensure that the fruits of science benefit all.

Over the course of the next decade, PIH’s work expanded to rural Rwanda, Lesotho, Malawi, Mexico, Kazakhstan, Boston, and the Navajo Nation. Dr. Farmer and PIH have received numerous awards and recognitions. In 1993, Dr. Farmer received the John D. and Catherine T. MacArthur Foundation Award (also known as the “Genius Grant”) and used the monetary award to found the Institute for Health and Social Justice, PIH's research and advocacy arm.

Q: What influenced your interest in administering health care to the very poor?

A: The effort to deliver high-quality health care to all who need it is both an intellectual challenge and a moral obligation. Physicians are trained to follow the pathologies that they seek to treat. For an infectious disease specialist like me, that means working among the poor. While I was an undergrad at Duke, I had the honor to learn from a nun named Sister Julianna, who advocated for poor migrant farm workers in North Carolina. Working with Sister Julianna in the fields sparked my interest in understanding the social and political structures that engender oppression and inspired me to take my first trip to Haiti. I have also been inspired by theologians like Gustavo Gutierrez, whose commitment to a “preferential option for the poor” has deeply influenced my practice as a physician and as an advocate for the oppressed. Accompanying patients in places like Haiti, Rwanda, Peru, and Boston has been a reminder of how important this work for health equity is—and a constant motivation in itself.

Q: Jim Kim, a cofounder of PIH, is now World Bank President. How does the World Bank partner with PIH to achieve its mission?

A: When we first had the idea for Partners In Health—and that “we” includes not just Jim and Ophelia [Dahl] and Todd [McCormack], but also Tom White and Father Fritz Lafontant and so many others—it was entirely based on the concept of partnership. At our sites today we work alongside not only thousands of community health workers, but also architects, agronomists, and economists. As for the World Bank, their stated mission is “a world free of poverty.” After working Jim for 30 years, I know how deeply committed he is to that mission and am excited to see how the World Bank moves forward under his leadership.

Q: How do partnering organizations assist in or complement PIH’s vision?

A: Partners In Health has always relied on partnerships—it is part of our name and part of our strategy. From the beginning, we have worked closely with many partners to care for our patients and help them get all of the services that they need. Cancer care is a good example. We worked closely with the extraordinary clinicians—and I’m including physicians, nurses, pathologists, and laboratory specialists here—and leadership at the Dana-Farber/Brigham and Women’s Cancer Center to develop the public Butaro Cancer Center of Excellence in Rwanda, built in collaboration with the government of Rwanda. We partnered with architects at MASSDesign and even made common cause with a NASCAR driver—Jeff Gordon’s Children’s Foundation has been a key partner in the Cancer Center. We are grateful to all of them and would not be able to do our work without many partnerships.

Q: What are the deciding factors in where you expand PIH’s efforts?

A: The most critical factors, from the very outset, have always been need (where is the burden of disease greatest?) and gap (where are needs not being met?). In the mid-1980s, Haiti was the poorest country in the western hemisphere (and it remains so today), and also had some of the highest rates of HIV infection in the world. We went to Peru because of the gap: the growing burden of drug-resistant tuberculosis was being largely unaddressed. We went to Russia—to Russian prisons to be exact—for the same reason. Our most significant expansion in the past decade has been in Rwanda, which had a very high burden of disease but also a strong commitment from the public sector to combat it. That is where our model can be most successful.

Q: How can the PIH model for infectious diseases be replicated in cancer?

A: Many of the cancers we see are not strictly “noncommunicable”—I’m thinking of how much Kaposi sarcoma we see at our sites in rural Africa, or how much cervical cancer we see in rural Haiti. So the dichotomy between communicable and noncommunicable—like the “dichotomy” between prevention and treatment—is often a false one. The PIH model is not focused on a single disease, but rather on working in partnership with national governments to build comprehensive systems of care. All of the work that we’re able to do—administering a chemotherapy regimen, safely delivering a breech baby, setting a broken bone—is dependent on infrastructure, training, and resources: what we call the “system of care.” This model links community health workers, local clinics, and hospitals supported by a feedback loop of research, training, and service.

Q: PIH has reached 2.5 million impoverished people across 10 countries, yet you’re quoted as saying, “I go to bed worrying about the promises we’ve made, and I get up each morning thinking we haven’t made enough promises.” Why?

A: There is much suffering in our world, and so much of it is caused by inequity. Partners In Health actively seeks to deliver high-quality care—the fruits of modern medicine—to the poorest of the poor and the most vulnerable. We are committed to this mission, and we’ve achieved a lot in the past 25 years. There is still, of course, a great deal of work to be done. Many people are still dying of preventable, treatable diseases. There are always new challenges (and new pathogens). Our work will not be a success when we reach most of the people in need, but all of them.

Q: What message will you have for health care professionals treating cancer during your lecture?

A: Cancer is everywhere and we need to treat it where we find it. Eighty percent of the burden of disease in your specialty falls on the developing world. The pathologies are the largely the same, and the treatments can be the same, too. The diagnostic and therapeutic advances of the past half-century have been astounding, particularly in oncology. The challenge, of course, is delivery. So we need to meet it. We need to deliver high-quality care, and we need to deliver on our promise to care for patients to the best of our ability and training.

References

1. Partners in Health. Accessed at www.pih.org.
2. Kidder T. Mountain Beyond Mountains. The quest of Dr. Paul Farmer: a man who would cure the world. New York: Random House, Inc, 2003.

Spend a day at any Partners In Health site and there’s a good chance you’ll hear a phrase you’re unfamiliar with. Perhaps it’s a clunky acronym or polysyllabic drug name. But don’t worry: Keeping up with the ever-evolving world of global health is hard, even for insiders. In Need to Know, we cut through the complexity and deliver the most pertinent and interesting information on a single subject. Today, we fill you in on the Malawi Household Chart. 

What is it?

The Household Chart seems pretty basic at first glance. It’s a two-page, paper form that looks like a simplified medical chart. But this chart—and the data it collects—has revolutionized the way PIH’s village health workers (VHWs) in Malawi do their jobs. The Household Chart is a data collection sheet that helps VHWs gather information about the health and social conditions of the families they serve. 

Why is it important?

Because VHWs live among PIH’s patients and visit them regularly, they’re able to closely monitor the pulse of the community. If a pregnant mother gets sick or a river floods homes that are nearby, VHWs are among the first to know. VHWs use the Household Chart to collect information during monthly visits to each household in their village. The chart prompts questions such as, “Have you been tested for HIV?” and “Have you been coughing for the past weeks?”—questions that allow us to identify patients who are at increased risk and provide social assistance or medical care where needed. PIH uses the combined information from hundreds of VHWs to monitor the health of entire communities. If they require services, PIH will refer or accompany them to the nearest health facility so that they receive the care they need.

Where does it come from?

The Household Chart was developed by the PIH team in Malawi based in part from lessons shared by the PIH team in Rwanda. Working with VHWs and clinicians, the Malawi team identified the information that VHWs could collect, and then designed the Household Chart forms to be as easy as possible to use. 

Why do you need it?

Accurately collecting, summarizing, and using large amounts of paper-based data is a huge undertaking. When summarizing figures from hundreds of different charts into an electronic database, it’s easy to introduce errors that make the data unreliable and less useful for making decisions about PIH’s programs.

How do you know the data collected are accurate?

We partnered with researchers at Harvard Medical School to apply an approach called Lot Quality Assurance Sampling (LQAS) to evaluate the quality of Household Chart data. LQAS is a technique used in manufacturing to evaluate the quality of, for example, a batch (or “lot”) of T-shirts that a factory produces. Instead of having to look at each T-shirt to determine its quality, LQAS allows the manufacturer to take a sample of T-shirts and determine if the quality of the lot of T-shirts is acceptable. PIH uses the same approach with Household Chart data. Using LQAS allows PIH staff to examine only a few Household Charts from a health center (the lot) and decide whether the summary data quality from dozens of VHWs is statistically good enough to produce reliable results.

Does it work?

Yes. The LQAS quality control efforts have made the Household Chart data more accurate and usable, according to peer-reviewed findings published in Public Health Action. Before LQAS started, four out of PIH’s five household chart areas had low data quality; after eight months of using LQAS to identify poor data quality and focus data quality improvement efforts, all five areas had high data quality. The results have been so positive that we’re now exploring ways to use the Household Chart and LQAS at other PIH sites around the world. 

Can I see one?

Sure. Below is a sample of the Household Chart. PIH has made a great effort to ensure the format and questions of the Household Chart are simple and intuitive for VHWs to use.

Nelson Moreta climbs into a canoe carved out of a tree trunk, a makeshift ferry to carry him across the Artibonite, the wide, shallow river that divides the island of Hispaniola into the Dominican Republic and Haiti. 

We’re on the far western side of the Dominican Republic in Elias Piña, the country’s poorest province. Except for a lone guard who waves people by without concern for passports, the river is the only sign of a border. The melody of konpa, the popular music of Haiti, drifts across the water and into the DR, one of many migrants to breach the porous border.

Moreta, a 53-year-old Dominican, spent 17 years working as a promoter of Barceló rum. But in 2011, he began working for Socios En Salud (SES), Partners In Health’s Dominican sister organization. Today he’s crossing the river to visit two Haitian HIV patients who live in Haiti, just across the border from the Dominican hospital in Banica. As a community health worker, his mandate is to provide social support and accompaniment to patients, no matter the obstacles.

“There are too many people with needs, too many people who are sick and don’t know it,” he explains.

Started in 2011 with funding from the U.S. Agency for International Development, Socios En Salud works to bolster HIV services at three existing Dominican Ministry of Health facilities. SES staffers conduct HIV education and testing in communities, provide training and supplies to local clinicians, and offer psychosocial support to patients through social workers and community health workers, such as Moreta.

While the SES-supported facilities are within the DR, a large percentage of their patients are Haitians who move to the DR for work—often without papers. While the economic opportunities are better in the DR, Haitians face new challenges, including discrimination and isolation, Moreta says.

“I defend the Haitians 100 percent no matter where they are,” he says. “They’re our brothers, and they live in bad conditions. They need a helping hand.”
 

Moreta passes through a nearby market on his walk from the river to his patient's homes. Photo: Stephanie Garry/Partners In Health.

After a half-hour walk under the blistering Caribbean sun, we arrive at the house of Francisco Ubiele, 50, where he lives with his family. It’s a small wooden home with eroding concrete floors, a tin roof, and curtains for bedroom doors. Also at the house is Mason Alcilie, 48, another man with HIV who lives nearby and has come to share his story.

After a few minutes, Ubiele and Alcilie open up about their experiences. Late last year, they fell sick. At first, they thought it was some kind of fever, and they tried to wait it out. By the time they went to the hospital in Banica, about an hour and a half closer than the nearest PIH clinic in Haiti, they were nearly unconscious.

Ubiele’s family carried him to the facility on a mattress. A friend of Alcilie’s hauled him on the back of a motorcycle to the river crossing. From there, friends had to carry an alarmingly gaunt Alcilie from the canoe to the shore because he could hardly stand.

Mason Alcilie, now 48, was gaunt and nearly unconscious when a friend brought him to a PIH-supported clinic last year. Photo: Benigno Antonio Nuñez Faña/Partners In Health.

At the hospital, the men tested positive for HIV and were immediately enrolled in the SES program, and shortly after began antiretroviral therapy. After spending more than a week in the facility, they returned home and were linked with a community health worker who would meet them at the river to give them their medicine, vitamins, and food packages. But now Moreta goes a step further by visiting them several times a week to make sure each patient is taking his medicine as directed and doing well.

Unlike many of SES’s patients who are HIV positive, Ubiele and Alcilie aren’t worried about others in the community knowing they have the virus. “I was sick, and now I feel good. It doesn’t matter if people know,” Alcilie says.

We thanked the patients and stepped outside the house, back into the brilliant light of midday, and began our trek back toward the river.

Nelson with Alcilie (left) and Francisco Ubiele (right). The health of both patients improved markedly after starting daily treatments. Photo: Stephanie Garry/Partners In Health.

Moreta reflected on the achievements of SES, explaining that one of the major victories has been community outreach and testing for HIV. Before SES began its work, the hospitals in Elias Piña offered HIV testing and care, but few sought out these services. Now, SES conducts multiple community outreach activities each month. Since the start of the project, the number of active patients enrolled on antiretroviral therapy has more than doubled from 22 to 70.

As much as Moreta believes in helping Haitians on principle, he also knows that it’s in his country’s best interests to fight HIV. He pauses, and points out that Ubiele fell ill after visiting his wife, who lives in La Romana, a large city more than 200 miles east of Elias Piña. She doesn’t know that her husband is sick, and she likely doesn’t know her HIV status, Moreta says.

PIH/SES staffers like Nelson offer a hopeful sign that Dominicans can—as they did after the 2010 earthquake in Haiti—see that their fates are inextricably entwined with their western neighbor.

A former journalist, Stephanie Garry works on the communications team at Partners In Health. She was a Peace Corps Volunteer in the Dominican Republic from 2009-2011

When Dr. Gaby Chalup arrived in the community of Plan de la Libertad, in Chiapas, Mexico, she didn’t expect to be delivering babies. “In theory we are not supposed to attend births in our communities,” says Chalup, 28, one of eight Mexican social service year physicians, called pasantes, working with Compañeros En Salud, PIH’s Mexican sister organization. Each pasante spends a year working in one of the remote, under-resourced government clinics that are scattered across the Sierra Madre Mountains.

Plan de la Libertad is a three-hour trek from the nearest hospital, Chalup says, noting that the 1,400-person community never had a resident doctor before her arrival. While it would take time for Chalup to earn the trust of the community, it didn’t take long before she was thrust into practice.

On her third day on the job, she found herself in a nearby adobe house where a 17-year-old lay on the bed, exhausted and in pain from a labor that had begun seven hours prior. Chalup had seen the young woman two days earlier and referred her to the hospital, but the family opted for a local midwife and home delivery. After assessing the situation, Chalup decided that the girl now needed to get to the hospital.

But 50 minutes later, and still many miles from a hospital, Chalup helped the woman deliver her baby in the bed of a pickup truck. It wouldn’t be the last delivery, or the most challenging.

A few months later, Chalup was working in the clinic when a family came in seeking help for their daughter. The woman’s water had broken three days prior, yet there was no dilation. Again, Chalup knew that getting the patient to the hospital was necessary so that labor could be induced, but some of the patient’s family members insisted that the baby be born in the village, “like all the rest.” Chalup did her best to explain the complications and persuade the family to go to the hospital.

“With all of the patients I have seen in similar situations, the babies have not come out on their own.” Chalup told the family.

At that moment, the woman’s father arrived and listened intently to Chalup’s advice. Soon after, Chalup accompanied the patient to the hospital where labor was induced and a healthy baby was born.

In her nine months working in Plan de la Libertad, she’s helped deliver three babies—“almost four!” she says. “I just have this luck.” Unlike the first two, the most recent delivery was planned and didn’t involve pickup trucks or familial negotiations. “I accompanied her from the diagnosis when I told her, ‘Look, you’ve got two little lines. You’re going to be a mom!’ up to when they said to me, ‘Doctora, when the baby comes, we want you to be there during the labor.’”

Chalup happily agreed, and after completing the requisite paperwork, packed up a little “birth” backpack and awaited the call. A few days later, at 5 a.m., Chalup heard a shout from outside her window: “Doctora Gaby!” Chalup shot up, grabbed her backpack, and ran out the door, shouting, “I’m coming!” Forty minutes after arriving at the patient’s house, she helped deliver another healthy baby.

That request will certainly not be the last. Slowly—with each birth, with each checkup, with each vaccination—Chalup is gaining the trust of a community that has long struggled to access quality medical care. Though she didn’t anticipate obstetrics featuring prominently during her time in Chiapas, Chalup is delighted with the experience. When asked about her hopes for her remaining time in Plan de la Libertad, Chalup responded, “I hope there will be more births.”
 

Emma Goodstein has been collaborating with the PIH team in Chiapas, Mexico since June 2012. Originally from Portland, Oregon, she graduated from Wesleyan University in 2010 with a degree in history and has since worked in various positions in the health care field in Portland and New York City. She will be entering Emory School of Medicine this fall.

For the release of To Repair the World, Paul Farmer's new book of speeches to young people, we asked supporters to share their advice to the next generation. Here are our top picks.

Believe a better world is possible

Never lose your fierce idealism. Let it be tempered by pragmatism, humility, and a willingness to learn, but never let anyone tell you that the better world you imagine is not possible. It is, through the power of partnership. - Emi K.

The data have done their job

It is our moral imperative to realize global health equity in our lifetime. This is not an easy task, but my murky vision of truth involves conveying the message that we need everyone’s hearts, minds, imagination, resources, and friendship to see this job to the end.  We have mountains of evidence reminding us that all signs point to poverty, oppression, and structural violence. And, until we collectively step up and systematically take care of every single person all of the time, we will find ourselves stumbling back into structures that add to collective despair rather than support human potential. My murky vision of truth tugs at my conscience and constantly reminds me that the data have done their job, and now the time has come to do ours. - Ashley D.

Five words

Five simple words: Be kind to each other. - Aziz H.

Think differently, imagine boldly, and act collectively

Our generation of health advocates stands on the shoulders of giants, to be sure: Giants who have improved the lives of thousands, who have forged change in small pockets of communities across the globe. Now we must find a way to make health justice the rule, to fight for equal health access and opportunity: to change the lives of millions. We cannot do this alone. Rather, we must build trusted partnerships -- across all disciplines, races, languages, and geographic communities -- rooted in our shared values of respect for human dignity, health equity and justice. We must challenge ourselves and each other to think differently, imagine boldly, and act collectively. And we must do it now.” - Amy T.

See through new eyes

In my work, I am fortunate enough to work with refugees from all over the world. Sometimes when I am working with a skilled interpreter, the interpreter will turn to me and say, "This might take a little longer because we don't have that concept in our culture." When we open ourselves to other cultures, we begin to develop the amazing capacity to see through new eyes, to hear through new ears, and to think from different perspectives. When we bring these new eyes, ears, and perspectives to bear on problems that have long been considered intractable, new solutions emerge, new energy is generated to push toward solutions, and new faith enters our hearts that even the most difficult problems can be solved. - Loren B.

Contribute to the next generation

When you actively seek to collaborate rather than passively accepting the effects of collaboration you will find people willing and interested in what you have to say. You may not always convince others to follow your ideas, but every single time you share them you leave a little bit of yourself behind. Please look around you and think of the generations that came before and contribute to the next generation. You are using the resources past generations left for you and you're adding what you have to them for the people who are to come. Spread your ideas wide, share yourself broadly, and collaborate actively. - Greg K.

Be driven by something grand

Some things are easy. Positive world change is not one of those things. My motto is: "You can't not do something, if the only reason not to is laziness." This motto gets me out of bed in the morning, pushes me through my 3 p.m. lethargy, gets my butt to volunteering after work. The reason my motto works for me is simple: I do not want laziness to be the primary motivation of my life. I want something greater, something more noble, something that helps others, to be the determining factor of my actions, and thus, my identity. If you ever think "should I?" but hesitate, or procrastinate, or give up, I can tell you that I was once like that, but am no longer. Let your life be driven by something as grand. Your life deserves it. - Annie D.

Always good advice

Be good to your mother. - Jim W.

On Mother’s Day we celebrate our own mothers, and honor mothers around the world who often risk their health and survival to bring forth life in difficult or even dangerous conditions. On my recent trip to Haiti, I saw firsthand the importance of reaching further, of pushing ourselves to re-imagine what’s possible in providing dignified, quality health care to women throughout motherhood and beyond.

Haiti has the highest rate of maternal deaths in the Western Hemisphere—one of every 93 women dies in pregnancy or childbirth. Haitian women have long faced obstacles to receiving quality health care during pregnancy and delivery. Some live far away from hospitals and often can’t afford transportation. Others may be reluctant to return to a hospital or clinic because their previous encounters were negative.

To overcome these obstacles—in Haiti and around the world—Partners In Health works to strengthen entire health systems. We focus on implementing sustainable systems that provide hospitals with proper equipment, supplies, medicines, and staff training. It’s not enough to provide safe birth kits, for example; those kits must be a part of a system that values health, safe pregnancy, and childbirth as human rights.
  
I spent a week in St. Marc, Haiti, where I visited Hôpital San Nicolas (HSN), which is run by PIH in close partnership with the Haitian Ministry of Health. Erin George, a Boston-based nurse midwife with PIH, showed me around the maternity ward and together we took stock of the supplies. While it was equipped with the basics, our quick survey made clear the disparity between what we provide laboring women at hospitals in the U.S. and what women in low-resource settings have access to. 

I also had the opportunity to witness my first birth during the visit. As the woman labored, the nurses and doctor continued to check her progress and noticed that she was quickly becoming exhausted. I watched a nurse carry over a bottle of juice, open it, and hand it to the panting mother. She took a sip—a brief moment of reprieve—and gave birth to a beautiful, healthy baby girl. The nurse’s compassion, humility, and respect for the mother were inspiring.

About 90 kilometers east of HSN is Hôpital Universitaire de Mirebalais (University Hospital), a shining example of what we can build when we push ourselves to re-imagine what’s possible in low-resource settings. The recently opened hospital is a state-of-the-art facility where women can access not only pregnancy and birth care, but comprehensive health services throughout their lives.

University Hospital complements the commitment and compassion of Haitian health care workers. It’s designed so that women can discreetly access services at one location. The maternity ward is spacious and full of natural light, with curtains separating each bed. A private courtyard with a fountain is a calming space for women in labor. In the recovery ward, a bassinet sits proudly next to each recovery bed—a safe place for mother and newborn.

The ward was silent in the days leading up to the hospital’s opening. But when I closed my eyes, I could imagine every bassinet occupied by a new generation of boys and girls, a generation that will be raised by mothers who have access to a health system that offers dignified care and truly celebrates the accomplishment of motherhood.

While we all take great pride in what University Hospital will offer the women of rural Haiti, we know that not all women will be able to give birth in this hospital. That’s why we continue to work toward improving services at hospitals and clinics in Haiti and around the world.

On this Mother’s Day, we invite you to join PIH in celebrating the mothers of Haiti, Rwanda, Malawi, Lesotho, and beyond. Working together, let us re-imagine what is possible when we commit to a high standard of health care for every woman throughout her life.

Katie Temes works on the Training Team at Partners In Health and coordinates the efforts of the Women's Health Working Group. She is an aspiring nurse-midwife and hopes to practice nurse midwifery in resource-poor settings, both domestically and globally.
 

In honor of International  Nurses Week, we’ve explored how nurses embed themselves in rural communities in southern Mexico and how they mentor one another at clinics throughout Rwanda. Today we focus on how nurses operate in one specific hospital, Hôpital Universitaire de Mirebalais (University Hospital), the first teaching hospital in central Haiti. It’s a facility that depends on the nimbleness of nurses and their unwavering commitment to improving the patient experience.

University Hospital  also will serve as a site for clinical rotations for Haiti’s national nursing schools, and offer nurses advanced training in several specialty areas, including emergency care, neonatal intensive care, and surgery.

Sheila Davis, PIH’s chief nursing officer, recently sat down with Alexandra Millien, nursing manager of University Hospital’s outpatient clinic, to discuss how nursing is evolving in Haiti, what University Hospital means to the community, and how the hospital is elevating the standard of nursing across the country.

Davis: How long have you been a nurse, and where did you work before?

Millien: Since 2007 I’ve been a nurse. I was previously working in Belladère [a PIH/Zanmi Lasante district hospital] at the pediatric outpatient and inpatient areas. It was a good experience.

Tell us about your first nursing job.

First I worked in a nursery for children. After that, I worked with Management Sciences for Health, running some of their maternal-child health programs across sites. And then the earthquake happened, and I was responsible for running nutrition services for the four camps that Zanmi Lasante ran in Port-au-Prince. And then I transitioned to Belladère.

And what’s your job now at Hôpital Universitaire de Mirebalais (University Hospital)?

Nursing manager for the outpatient clinic.

What excites you about working at University Hospital?

This is a large hospital with a lot of new equipment that we’ve never had access to before. It’s a really incredible opportunity to provide the highest standard of nursing possible.

When patients come into University Hospital, what do you want them to say about nursing care?

The first thing I would hope for is that they are very satisfied. Our main goal is making sure our patients are getting the care they want and need so that they’ll return again when they need to.  For instance, if they have to come back and get a surgical procedure, we hope they won’t be scared because they know from their first experience that they’ll be in good care.

How do you think nursing in Haiti is changing?

In comparison to 10 years ago, there have been lots and lots of increases in medical technology around the world. We’ve come really far along. And in 10 years from now, nursing will continue to evolve with new technologies and advancements.

What should the global nursing community know about University Hospital?

Nursing at University Hospital is being prioritized. Every month there’s an evaluation of nurses—there’s a new standard. Every person at every stage of care is doing everything they can that is best for their patient.

What would you ask the global nursing community?

I’d ask the international nursing community to help Haitian nurses stay up-to-date on all new advancements, because a lot of time our training is outdated and others have opportunities quicker than we do. We’d like training opportunities for Haitian nurses to happen in a timely fashion so they’re not behind the times.

And why did you become a nurse?

[Laughs] Because I like to take care of people.

Yet Rwanda has achieved remarkable gains in public health; it’s the only country in the region on track to meet all the health-related Millennium Development Goals by 2015. How’s this possible given the dearth of docs? While it’s a complex answer worthy of a dissertation, it doesn’t take a Ph.D. to realize that nurses have played an instrumental role in the country’s turnaround.

But ensuring that thousands of nurses with varying levels of education and professional experience deliver consistent care is a logistical and pedagogical challenge. Fortunately a program pioneered by Partners In Health in close collaboration with the Rwandan Ministry of Health (MOH) provides an innovative and cost-effective solution that’s fundamentally changing the quality of care nurses provide.

Known as MESH—short for Mentoring and Enhanced Supervision at Health Centers—the program links experienced nurse mentors to staff nurses at rural health centers. It’s similar to the clinical mentoring that’s common in wealthier countries, just far more flexible.

“This is a simple solution that yields remarkable improvements in quality of care,” says Anatole Manzi, MESH-QI program director. “It’s simple in the sense that we use existing resources to address huge quality and systems gaps while boosting nurses’ confidence.”

Mentoring the Mentors

In many developing nations, formal continuing education for nurses isn’t standardized. To keep them abreast of best practices and new policies, countries often host massive weekend-long seminars in large cities. For those in rural clinics, travel to these events is costly and time consuming. And determining whether the participants actually apply what they learn in real-life clinical scenarios is impossible. This one-shot approach leads to inconsistent skill levels among nurses, which directly affects the health of the poor.

MESH alleviates these shortcomings through layered mentorships and continued follow-up meetings. Inshuti Mu Buzima (IMB), PIH’s Rwandan sister organization, works with nurse supervisors who are hired by the government and specialize in four clinical fields: child health, women’s health, HIV care, and adult acute care.

Before these nurse supervisors are deployed, IMB helps polish their mentoring skills so they can be effective educators once in the field.

“Educating nurses to be good mentors is important and rarely happens in any country,” Sheila Davis, PIH’s chief nursing officer, says. “Being a good clinical nurse doesn’t necessarily mean that someone can be an effective mentor.
A vital part of MESH is assuring that our mentors are experts clinically and that they have the skills to provide specialized support for nurses in the health centers.”

Over several days, the mentors are introduced to theories of adult learning and hone communication techniques for delivering feedback to the less-experienced nurses they’ll encounter. This initial training is reinforced through monthly follow-up meetings led by IMB.

After the training, mentors visit their assigned posts every four to six weeks to work alongside the nurses. These trips usually last between two and three days, during which the mentors guide the nurses’ decisions and review what worked and what didn’t.
 

Bridging the Gap 

MESH first launched in November 2010, when PIH and the MOH implemented it at 21 health centers spread across two rural districts that serve approximately half a million people.

After a few months, mentors discovered that nurses across sites struggled to screen and treat children under 5 who had symptoms such as diarrhea, fever, and acute breathing and feeding difficulties.

The mentors reported this gap in care to the MOH, which responded by having its Child Health Unit organize trainings focused specifically on childhood illnesses. After the trainings, the nurses’ abilities to manage child illnesses improved significantly, according to a recent article in the peer-reviewed journal Nursing Outlook.

“Identifying a need and being able to implement a strategy that can improve patient care effectively and efficiently is exactly how health system strengthening should happen,” Davis says.

Other data showing the benefits of MESH have recently started to surface. A year into the program, participating nurses increased the accuracy of their clinical performance by nearly 20 percent for child and maternal health, and by 13 percent for adult health.

“We are thrilled to get these results within such a short time,” Manzi said. “MESH is not a magic secret; rather it’s a shift in thinking and strategic planning. I am excited to see fewer kids dying due to bad quality of care, fewer women dying while giving births, and more successes at IMB-supported sites and throughout Rwanda in general.”

Based on the initial success, the Rwandan government has decided to expand the HIV portion of MESH throughout the entire country. There’s little doubt that this will help the country sustain and build on its impressive health gains.

1. Donate

It seems simple—and perhaps too easy—but a donation in solidarity really is the most effective way to help us put more local nurses on the job and give them the tools they need to save lives.

PIH employs hundreds of talented nurses in poor communities around the world, but to succeed they need medicine, supplies, training, and more colleagues.

Donate now

Anyone can donate, but nurses should take special satisfaction in knowing that fellow nurses make up nearly 83 percent of PIH clinical staff.

2. Get educated, get involved

Globally, nurses deliver 90 percent of all health care services. The nurses we know are passionate, fiery advocates for patients’ rights and for their fellow nurses. These numbers—combined with hard-earned credibility and a will to bring about change—make nurses a potent force in the movement for global health equity.

Invite your fellow nurses to get educated and get involved by following PIH:

3. Share your knowledge

Through the wonders of the Internet, it is now possible for health care experts around the world to collaborate, eliminating geography as a barrier to knowledge.

Global Health Delivery Online (GHDonline.org) is a platform of expert-led communities where health care implementers collaborate to improve the delivery of health care.

The communities are open and eager for new voices. Sign up now to start contributing:

4. Volunteer or find a job with PIH

While PIH prefers to hire locally, our field teams do occasionally request volunteer help. Our volunteer opportunities include 12-week or longer positions for experienced nurses. Learn more about clinical volunteer opportunities here.

In addition, PIH regularly recruits top talent to fill knowledge gaps and bring fresh perspective to our cause. You can see all PIH volunteer and employment opportunities here.

5. Volunteer or find a job with another global health organization

In recent years, the number of organizations focused on global health has increased dramatically. We’re fortunate to call many of these excellent organizations partners, and highly recommend that you explore the volunteer and employment opportunities they offer.

PIH Partner Projects
These organizations are working to implement the PIH model across the globe. A list of volunteer and employment opportunities with them is available here.

Global Health Service Partnership (GHSP)
Global Health Service Partnership is a capacity-building model based on education. The Peace Corps and the nonprofit GHSP together are deploying American physicians and nurses for one-year assignments as embedded faculty at medical and nursing schools in Malawi, Uganda, and Tanzania.

Learn more about the GHSP here.

Human Resources for Health Program (HRH)
The Ministry of Health in Rwanda has partnered with a consortium of top U.S. institutions of medicine, nursing, health management, and dentistry that are committed to sending faculty to schools of medicine and nursing, and hospitals throughout Rwanda.

You can learn more about how to get involved with HRH here.

Rosa Huet Pale goes home only on the weekends. Monday through Friday, the 23-year-old nurse is in Plan de la Libertad, a small, hard-to-reach village in Chiapas, Mexico. Most nights she sleeps in the home of a community member.

“My hometown is about six hours away. Sometimes I only go home twice a month,” she says.

PIH’s Mexican sister organization Compañeros En Salud (CES) began working in Chiapas in 2011 with support from Green Mountain Coffee Roasters. The focus is on bolstering primary care services at understaffed and under-resourced clinics, a mission that leans heavily on the versatility and commitment of nurses like Pale. Nurses embedded in the region are vital to long-term strategies for fighting non-communicable diseases. They’re also expected to be among the first responders to emergencies and complete reams of documentation to track each patient visit.

On any given day, Pale says, she could go from vaccinating kids in the clinic to checking vitals at a patient’s home, to doing a Pap smear and advising on family planning methods.

“Just today we had three home visits, all of them related to maternal and child needs. Very early this morning, the doctor delivered a baby in the home of one of our patients. This morning I measured and weighed the newborn, and later in the afternoon we returned and I administered the first vaccinations,” Pale said. “Next week I will screen the baby’s metabolism …. Home visits get us closer to the life of our patients.”

Nursing in Chiapas, where more than half the population lives below the national poverty line and there aren’t enough doctors to staff every clinic, is difficult. Challenges range from vaccine shortages to making sure clinical waste is properly disposed.

Then there’s the sheer remoteness of villages such as Plan de la Libertad, which is wedged among the peaks of the Sierra Madre de Chiapas—a mountain range that spans from southern Mexico to Honduras. The rugged geography hinders the delivery of care: If a patient of Pale’s needs a complicated procedure, he or she may have to travel hours to reach a hospital, a financial burden that affects the entire family.

“Getting a patient out of the community is difficult and requires coordination and help from the family and the community,” she says. “Sometimes the doctor and I, or at least one of us, will go with the patient to provide assistance along the way.”

For an area that has long been neglected, CES is making steady progress toward integrating primary care services. And while Pale will continue to fret over the countless day-to-day obstacles and make personal sacrifices, she doesn’t lose sight of her larger mission.

“More than anything, what inspired me to become a nurse was the desire to help people,” she says.

Travel back with me to the early 1980s, when I first went to Haiti. A college class at Duke University got me interested in health disparities and also piqued my curiosity about Haiti, where I headed shortly after graduating. I ended up in a sleepy market town in central Haiti called Mirebalais, living in the rectory of an Episcopal church and working in a hot, overcrowded clinic.

My job was to take vital signs and to give moral support to the beleaguered young physician. We became good friends, and in time he confessed how tired he was of working in such a shabby facility. But he never did much to change it. The doctor, not yet thirty, had been schooled for scarcity and failure, even as I’d been schooled for plenty and success. Even though he himself was not poor, working in that clinic had lowered his expectations about what was possible when it came to providing health care to those living in poverty.

And who could blame him? The same verdict was being drawn by most “experts” in international health at that time. As today, Haiti was the poorest country in the hemisphere and thus had one of the greatest burdens of disease; the magnitude of its challenges was difficult for me to comprehend. But the assumption that the only health care possible in rural Haiti was poor-quality health care—that was a failure of imagination.

I’ve since learned that the great majority of global public health experts and others who seek to attack poverty are hostages to similar failures of imagination. I’m one of the bunch too, of course, and am telling you this because it’s taken me a long time to understand how costly such failures are. Every day in clinic offered vivid reminders of the toll exacted by a lack of imagination.

It wasn’t a failure to work long hours—we all did that—but rather a failure to imagine an alternative to the kinds of programs that the public health literature deemed “realistic,” “sustainable,” and “cost-effective”—three terms already in circulation by the late 1980s. Most of my Haitian colleagues were, like the doctor, unconvinced that excellence was possible. My experiences in Mirebalais that first brutal and instructive year inspired a lifelong desire to see, in Haiti, a hospital worthy of its people.

Mirebalais, in 1983, was also where I met Ophelia Dahl, and Father Fritz and Yolande Lafontant, who took me in as a volunteer. All of us had figured out, with hope and angst and revulsion, that rural Haitians deserved better medical care, and a couple years later, this group founded Partners In Health along with a few others picked up along the way.

None of us imagined that a greater affront to Haiti would occur on January 12, 2010, when a massive earthquake laid waste to Port-au-Prince. The quake forced us into the role of a disaster relief organization in addition to that of a health care provider. It also made us completely rethink our plans to build a hospital in Mirebalais. With Haiti’s national nursing school destroyed and its medical school damaged and closed, with most of Port-au-Prince’s hospitals down or in shambles, where would the next generation of Haitian health professionals train?

Partners In Health supporters had sent thousands of donations for rebuilding. But they wouldn’t be enough to rebuild something really bold and beautiful; we needed something bigger, many times bigger. Together, a crew revised plans more than a dozen times, enlarging their scope again and again, and making it, in the end, a 205,000-square-foot medical center. That was three times the size of anything we’d ever attempted to build before. Let’s say that these plans were our response to inveterate failures of imagination.

To some, the hospital is just a building in progress, one project among many. But for me, it’s emblematic of our respect for the Haitian people and of our aspiration to make the fruits of science and the art of healing more readily available to people in sore need of them.

How does this story relate to you? First, try to counter failures of imagination. A great many people, including public health experts and some of our own coworkers, shook their heads and advised against the more ambitious version of the Mirebalais hospital. I’m not saying they were wrong. It will be a long time before we can declare this effort a success. Hospitals are the bedrock of every health system, but they are large, expensive, complex institutions to run. The complexity of hospital-based care is one of the reasons public health starts with the low-hanging fruit: vaccines, family planning, prenatal care, bednets, hand washing, and latrines.

But the more difficult health and development problems—from drug-resistant tuberculosis, mental illness, and cancer to lack of education, clean water, roads, and food security—cannot simply be left for a better day. What about the higher-hanging fruit? Do the tools and strategies of global health permit us to care for people with more complex afflictions? Can we answer more of the need?

The short answer: of course we can, with innovation and resolve and a bolder vision than has been registered over the several decades.

Second point: as you seek to imagine or reimagine solutions to the greatest problems of our time, harness the power of partnership.

Partnership has been the font of our work since it began in Mirebalais three decades ago. It’s why we refer to our collective as Partners In Health in a dozen languages. Sometimes, these are partnerships among service providers, teachers, and researchers. Always they are partnerships among people from very different backgrounds (within one country or across many). Sometimes the partnerships link different sorts of medical expertise—surgical, medical, psychiatric, and so on. Sometimes they bring together people who design and build hospitals with those who know how to power them with renewable energy or link them to the information grid.

Above all, such partnerships link those who can serve with those who need services—and seek to bring the latter group into the former, by recruiting them to act as community health workers, for example. By moving people from “patient” to “provider” and from “needy” to “donor,” we can help break the cycle of poverty and disease. That’s our sustainability model.

Partnerships are not always easy to maintain. Often competition rules when collaboration should prevail. People working to fight poverty are, like my doctor-friend in Mirebalais decades ago, too often schooled for scarcity. Where joblessness is the status quo, building new hospitals and schools can bring disappointment to some: everyone wants to work there—and usually not because they want a better job, but because they want a job, period. If someone else gets a job, our colleagues assume that they will not.

This sort of limited-good, zero-sum thinking is to be expected among those living in poverty, who know from firsthand experience that good things usually are in short supply. But such thinking is less acceptable among goodwill groups (foreign or homegrown) and among development experts seeking to attack poverty. Poverty will not surrender to a zero-sum strategy. And neither will the other great challenges before us, from global warming to prolonged and equitable growth of the world’s economy.

Remember that your own success will not come without real partnership. Do not think of it as coming at the cost of someone else’s success. As new challenges arise to the survival of all dwellers on this planet, your generation, more than any other, will need to embrace partnership.

Adapted from To Repair the World: Paul Farmer Speaks to the Next Generation (University of California Press, 2013).

Dr. Paul Farmer is chief strategist and co-founder of Partners In Health, Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. Check for his speaking events in your area.

It was by way of a joke that Dr. Paul Farmer introduced Ann Polaneczky to a crowded room at PIH’s Boston office. “What comes to my mind when I think of Ann, is stool,” Farmer said, causing the 24-year-old civil engineer to blush with pride. When the collective burst of laughter tamped down, Farmer qualified the punch line by expounding on the importance of Hôpital Universitaire de Mirebalais’ (University Hospital ) wastewater treatment system, and how Polaneczky helped shape it. 

“The wastewater treatment system at Mirebalais, the guts of the hospital, is truly remarkable. It takes the wastewater, the gray water as it’s called, and runs it through a pretty sophisticated but easy-to-maintain system that gets checked every day,” Farmer said. “We never had that in Haiti—not just in a hospital, we never had it at any public-sector institution. It’s hard to know why these things are so significant without knowing how absent they are in a lot of places in the world. This system is just one example of how a modern hospital runs that’s worth getting to know.”

With that sentiment in mind, we asked Polaneczky, PIH’s project engineer, to walk us through five of her favorite feats of engineering at University Hospital.

Wastewater Treatment System

Photo: Partners In Health

What it does: Every drop of wastewater produced at University Hospital—whether from a toilet, an operating room sink, or dirty laundry—passes through this low-energy, low-maintenance system. The water first enters a biological treatment process known as aerobic digestion in which naturally grown bacteria decompose organic waste and devour pathogenic organisms, such as Vibrio cholerae—the bacterium that causes cholera. From there, the water is treated with chlorine for further disinfection. Right now, the system can treat 50,000 gallons of wastewater per day to U.S. EPA standards. If needed, Polaneczky says, it can be expanded to treat 75,000 gallons a day. 

Why it’s important: The immediate benefit is that the system significantly reduces the threat of waterborne diseases, such as cholera and dysentery. But there’s a less tangible benefit that Polaneczky is keen on: “We want to show that it’s possible to treat wastewater in an efficient, economical, and sustainable way in Haiti and other low-resource countries,” she says. “This shows that it can be done.”

Incinerator 

Photo: Partners In Health

What it does: This school-bus-size machine allows University Hospital staff to properly dispose of biohazardous medical waste and used sharps, including syringes and scalpels. Polaneczky explains that the system meets U.S. EPA emission standards. How? The waste is burnt in a controlled fire in the machine’s first chamber. The resulting smoke is captured in a second chamber that reaches 1,000 degrees Celsius—similar to the temperature of liquid lava—and essentially gets vaporized. The end result is steam and a small pile of ash.

Why it’s important: Properly disposing medical waste is critically important, yet many health care facilities in Haiti don’t have the necessary equipment to do so. It’s not uncommon for human waste to be mixed with sharps and garbage, and then burnt in crude devices or trash pits. The noxious fumes are bad for the environment and human health. As University Hospital integrates into Haiti’s health system, the incinerator may serve as a central location to dispose of medical waste produced at other PIH/ZL sites. 

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Fiber Optic Network

Photo: Stephanie Garry/Partners In Health

What it does: Polaneczky describes the fiber optic network as the “backbone of the hospital,” providing high-speed Internet access throughout the facility. A robust server package donated by HP optimizes it. High-tech and resilient, University Hospital’s IT system supports everything from patient registration to inventory management to digital radiography.

Why it’s important: University Hospital is the first teaching hospital in central Haiti. When medical education and training begin, Haitian doctors can consult with partners in Boston and beyond as needed through video conferencing and other digital technology, which extend from the operating rooms to the hospital’s classrooms. On a day-to-day basis, the network improves efficiency and facilitates monitoring, evaluation, and quality improvement projects.

Medical Gas System

Photo: Rebecca E. Rollins/Partners In Health

What it does: Behind the walls of University Hospital is a labyrinth of copper pipes and vacuum and air lines that ensures patients in need of oxygen have quick access to it—whether they’re undergoing surgery, being cared for in the emergency room, or in recovery. A major asset of University Hospital is that it has its own oxygen concentrator, a device that removes nitrogen from the air to produce medical-grade oxygen.

Why it’s important: Without this system, we’d need to have bedside oxygen tanks available for any patient in need of oxygen, which is both expensive and logistically difficult. Additionally, suction and compressed air would need to be supplied for patients. Quick access to these oxygen and suction tubes allows us to deliver better care to more patients. 

HVAC

Photo: Partners In Health

What it does: Given that University Hospital stretches over 200,000 square feet and includes a pharmacy that stores temperature-sensitive medications, effective climate control was a must. The hospital boasts four 12.5-ton rooftop cooling units and a separate 20-ton condenser for the pharmacy. In areas of the hospital where air conditioning would be a luxury, the designers opted for energy-efficient ceiling fans and elegant design that fosters natural air flow.

Why it’s important: It’s not about just keeping cool. “The HVAC system supports infection control in operating rooms and allows us to preserve medical equipment,” Polaneczky says. University Hospital’s HVAC system, she explains, utilizes HEPA filtration and laminar flow, meaning the air is pushed from ceiling to floor rather than across a room, which minimizes the risk of surgical infections. 

In March, 8-year-old Belizaire Selfanord started to feel sick after he came home from school.

By the following morning, he was so ill with diarrhea and vomiting that he could hardly stand up. His mother, a widow raising six children alone, knew where to go—the Partners In Health cholera treatment center in Mirebalais, in central Haiti.

Inside the fenced collection of large tents, Dr. Thelisma Heber asked him a few questions about his symptoms, but there was no doubt Belizaire needed IV fluids immediately. “He’s a severe case. You can see his eyes are sunken,” Heber said.

Belizaire’s mother, Sentane Pierre, helped him onto a wooden bed with a hole and a bucket beneath. Heber examined him, pulling the skin on his belly. It was stretchy like bread dough—a sign of dehydration. According to data from Partners In Health and our Haitian sister organization, Zanmi Lasante, PIH/ZL has treated twice the number of cholera cases this January and February than during the same months last year. As the spring and summer rainy season in Haiti begins, PIH/ZL clinicians are concerned that cholera could spike again, especially because emergency cholera funding has largely ended, causing many prevention and treatment activities to cease.

“In most of the areas we serve, it seems that we are the only cholera health care provider, and that puts more pressure on our services,” said Dr. Ralph Ternier, director of community care and support at PIH/ZL.

PIH has treated more than 100,000 patients for cholera and has worked to prevent cholera’s spread since the epidemic began in late 2010. PIH/ZL also supported the delivery of Haiti’s first cholera vaccination program, which has since provided evidence for wider use of the vaccine in Haiti. PIH/ZL continues to operate cholera treatment centers in central Haiti, and conduct prevention activities and educational outreach. In January and February, PIH/ZL treated more than 2,000 patients for cholera.

The impact of the loss of funding is clear. It has threatened the quality of care at the few centers that still provide cholera treatment, Ternier said, because fewer staff have been on hand to care for patients. And because untreated cholera can result in more infections, a lack of treatment also affects prevention. When people fall ill in communities without a treatment center, they not only go without care but also spread the bacteria, which could then infect others.

“How many people will have to die in a stupid way? Dying of diarrhea is stupid,” Ternier said. The cholera epidemic has killed more than 8,000 people in Haiti and sickened more than 650,000, according to Haiti’s Ministry of Health. “Donors get distracted unless there’s a big spike in numbers and people start to die rapidly. Otherwise people have gotten used to the idea that cholera is here.”

Belizaire wasn’t the only patient Heber and the rest of the staff were treating at the cholera treatment center. Heber, 40, examined and admitted a half-dozen patients in less than an hour. He triaged them to either receive oral rehydration solution or, for more severe cases, to be hospitalized and given IV fluids. In different tents designated for men or women, two sisters and their father were also receiving fluid from IVs. They each had to pay for a car to bring them to the cholera treatment center as they each became sicker over the course of the night. Heber said families can become infected when they eat the same contaminated food or water, don’t wash their hands, or take care of a sick relative.

Heber said that continuing to fight cholera can be difficult, as Haitians and foreigners perceive that the crisis is over. Because Haiti lacks proper water and sanitation systems, individuals must try to prevent the disease themselves through hand-washing and good sanitation, but they can’t always afford to buy soap or treat their water.

“It’s a big battle to combat cholera,” Heber said.

Shin Daimyo is a kinetic presence at Partners In Health. The 28-year-old program manager for the mental health program bounces through our Boston office daily, weaving clinical and programmatic insights with gut-busting one-liners. He’s as good-humored as he is dedicated to expanding mental health services in the countries where we work.

From tackling health issues on the Obama campaign to developing clinical protocols for mental health services in Haiti, Daimyo’s work has always focused on delivering high-quality health care to vulnerable populations. But he’s the first to admit that the path toward making his passion a reality has been tough to navigate at times. Recently, Daimyo authored a chapter in Do Good Well: Your Guide to Leadership, Action and Social Innovation, a book that noted New York Times columnist Nick Kristof dubbed “a practical field guide for young people wanting to change the world.”

We caught up with Daimyo to discuss what doing good well means in the world of mental health and to learn more about how PIH is innovating simple and scalable models of care for mental health in low-resource settings.

Q: Hey, Shin! Thanks for taking the time to chat. So why don’t you start by explaining to readers what you do on a day-to-day basis at PIH?

Thanks for having me! As the program manager for mental health, I’m responsible for the overall management of our programs in Haiti and Rwanda, and I also provide support to burgeoning clinical work and research in Mexico and Lesotho. On any given day, I'll be meeting to develop clinical protocols for depression; talking with a potential partner to provide clinical supervision to our psychologists, social workers, and physicians; and developing indicators to track mental health patient outcomes, among other tasks. I work with a great team of people who bridge a range of disciplines and nationalities.

One project our team has been working on is building a long-term strategy for epilepsy care that can be scaled up across resource-poor settings. An underlying goal of all our programs is to expand the capacity of local clinicians to deal with the high rate of mental and neurologic disorders. Recently, our partners in Haiti at Zanmi Lasante received a large grant from Grand Challenges Canada to develop a community-based model of mental health care and expand and bolster mental health services at all our health centers and hospitals in Haiti. In collaboration with Harvard Medical School, we also manage the Dr. Mario Pagenel Fellowship, which sends senior psychiatrists to Haiti and Rwanda so they can provide clinical and programmatic supervision to local staff.

Q: When many people think of health issues in the developing world, they often think of infectious diseases such as HIV/AIDS or tuberculosis. Are you seeing a shift toward greater awareness of mental health in low-resource countries?

That’s a complicated question, and I think it’s important to look at it from the perspective of local governments and development partners, such as bilateral organizations and foundations. We are starting to see a shift among low-income countries in terms of their prioritization of mental health, especially as more and more countries develop mental health laws and policies. This is most clearly seen with our work in Haiti and Rwanda. The Haitian government has voiced strong support for our Grand Challenges Canada project to scale up services over the next three years at our joint sites. Our plan is to present a roadmap for delivering similar services in the rest of the country.

In Rwanda, the Ministry of Health has done an incredible job of decentralizing and scaling up mental health services at public facilities, and it continues to invest its own resources to provide mental health care to its population. Inshuti Mu Buzima, PIH’s Rwanda sister organization, works closely with the government to provide technical support. It’s a wonderful model.

As a whole, however, there isn’t enough investment, both politically and financially, for mental health. That’s why funding from donors such as Grand Challenges Canada is so important. It signifies a nascent shift in thinking and prioritization of mental health services that can be sustainable and impactful. We strive not only to provide incredible care to the most vulnerable populations, but to also advocate for increased political and financial commitments to mental health. 

Q: So how did you come to be involved with Do Good Well, and what was your contribution to the book?

Nina Vasan, a lead author of the book, is a good friend and past colleague. We met in 2006 while I was working at the World Health Organization in Geneva in the department of mental health policy and service development. We had many conversations about nonprofits, leadership, movement building, and social change, and were surprised about how many lessons and beliefs were common to our experiences. She ended up recruiting me to the Obama campaign soon after, where we formed a formidable team in key battleground states. We have stayed in touch since then, supporting each other as we furthered our careers in social change. Nina reached out to me about a year ago to help write a chapter.

Q: And what did you decide to write about?

My chapter focuses on how you refine your passions and define your goals, and how to take concrete steps toward a sustainable career in social change.

I empathize with being really passionate about wanting to make a difference, but having no idea or direction on how to get there. I started as a business major in college then changed to psychology. I coordinated alternative spring breaks focused on poverty, the environment, and cross-cultural issues, and I worked with children with serious emotional disabilities. From there I worked in student affairs, applied to three graduate programs in different fields, and did a whole lot of research on at-risk youth. Then I moved on to quality improvement and management work in four hospitals in Lesotho, acted as director for President Obama’s health care work in Florida, and co-founded a student-run global health journal at Boston University School of Public Health, where I earned my master’s degree.

I’m not saying this to brag about all the avenues I’ve been down. The entire time, working for the most vulnerable populations has been my core motivation. But it took a very long time for me to hone in on how I wanted to make my passions a reality, a career. I truly see my role at PIH as the realization of my passions, and my hope is that the chapter helps others do the same.

Q: Noted New York Times columnist Nick Kristof called Do Good Well “a practical field guide for young people wanting to change the world.” And a theme throughout is this notion of social innovation. How is social innovation unfolding in the world of mental health?

People often associate innovation with some sort of new, fancy technology, which is sometimes the case. Other times, however, innovation is just doing something simple in somewhere it has never been done. We live in a world of finite resources, and consequently we must pursue creative ideas that have the greatest benefit to the most number of people.

Back when PIH first started, many people believed HIV drugs couldn’t be effectively provided to people in low-resource settings or in isolated rural areas. When PIH proved this wrong by deploying a simple, targeted strategy founded on community health workers (CHWs), we were innovating, and it worked. Now we’re demonstrating the same thing with mental health. High-quality, community-focused, evidence-based mental health services that are culturally appropriate can and should be provided in low-resource settings. That in itself is something the world is still trying to believe and realize.

Q: In previous conversations, you’ve mentioned the effectiveness of mobile mental health clinics. What are they and are they capable of providing long-term care that some patients struggling with, say, depression or schizophrenia may need?

Imagine a multidisciplinary team of psychologists, nurses, physicians, and social workers packed into an SUV driving to the most remote part of Haiti to provide care. This team meets up with a CHW, who they are in constant communication with, and goes out in the community to screen for mental disorders and provide initial treatment. The CHWs play a key role: Because they are embedded in the community, they can refer individuals to the mobile team when they arrive.

Now imagine this is done on a monthly basis while the CHW stays in the local village to provide follow-up care and appropriate referrals when necessary. This is a long-term model for care, and it’s terrific.

Q: Are there any technological innovations emerging for mental health at our sites?

We are currently developing a mobile health, or mHealth, pilot where our CHWs will utilize cell phones to track, screen, and refer patients from the community to health centers and mobile clinics. The phones will likely have a decision support model— a tool that helps CHWs make clinical and referral decisions based on the types of symptoms the patient has—to effectively support and improve clinical care in the community-based model. It’s still a young project with lots of potential, so stay tuned for more information in the coming months.

That’s why more than 20 data devotees and quality-improvement champions from six PIH sites traveled to Rwinkwavu, Rwanda, last month for the second annual Monitoring, Evaluation, and Quality (MEQ) Summit, “From Counting to Quality.”

The MEQ Summit is delightfully PIH in spirit, the type of event where you’ll hear a Haitian doctor who works in Malawi translating medical terms from English to Spanish for a Peruvian M&E coordinator. And while discussions of how best to link longitudinal data systems with medical records may seem abundantly esoteric to most people, that’s the type of information the MEQ teams use to help PIH reduce mother-to-child HIV transmission rates.

“It’s good to have a space where different teams can openly share and discuss the challenges they face and the successes they have achieved with like-minded staff from the other sites,” says Jean Paul Joseph, leader of quality improvement at Zanmi Lasante, PIH’s Haitian sister organization. “Even the small efforts that other sites are taking to improve data and patient care can teach us a lot about improving our own programs.”

Take for instance a presentation at the first MEQ Summit in 2012 by the team from PIH/Lesotho (PIH/L). They shared a simple yet effective form to track HIV patients who had stopped coming to the clinic. At this year’s summit, Sophie Motsamai, an M&E clinical manager from PIH/L, was proud to hear that colleagues at several different PIH sites had adapted the form to follow up with their own patients who had fallen out of care.

Among this year’s presentations was a discussion of how to improve the quality of data collected by community health workers (CHWs). It’s a hot issue because CHWs at all our sites play an invaluable role by visiting patients and accompanying them throughout their treatment—whether it’s a two-year multidrug-resistant tuberculosis program or ongoing accompaniment for HIV-positive patients to take their lifesaving medications.

Given their frequent, close contact with patients in the community, CHWs are in a unique position to collect patient data. Because they come from the impoverished populations we serve, however, CHWs’ educational backgrounds can vary widely. As a result, it can be challenging for them to collect accurate data in the field.

But as demonstrated by colleagues at Inshuti Mu Buzima, PIH’s sister organization in Rwanda, simple protocols and easy-to-use tools for feedback and supervision have made it easier to manage how CHWs collect data. Through the use of straightforward data dashboards—tools that automatically turn raw numbers into easy-to-interpret graphs and tables—program managers can quickly identify which CHWs are collecting high-quality, accurate information from the patients they serve, and which ones may be facing challenges.

“Global health organizations face a common challenge in understanding population health and needs at the village level in real time. Improving CHW data collection systems can give us an invaluable window into what is happening and where needs exist,” Lisa Hirschhorn, director of monitoring and evaluation at PIH, says. “This session brought together some of PIH’s most innovative thinkers and talented practitioners who’ve really moved this issue forward.”

Over the week-long summit, hands-on exercises were mixed in with roundtable discussions. Participants honed their abilities to use Gantt charts (a tool to track project implementation and outcomes) in clinical settings and explored the nuances of Geographic Information Systems for mapping the delivery of health services. Each participant returned home with fresh ideas and new tools for using data to improve outcomes for PIH’s patients.

“This year’s most inspirational moment for me was my Rwandan colleague Manzi Anatole discussing his work in mentoring nurses to improve patient care. This approach improves patient care, and the Rwandan team has the numbers to show that,” Joseph says. “All of us have worked together to create a culture of quality improvement and a team dedicated to improving care for our patients. Meetings like this help support a culture of constant improvement.”
 

In 2011, more than 8.5 million people became sick with tuberculosis and 1.4 million people died from it, according to the World Health Organization. That same year, according to WHO estimates, 630,000 people were sick with multidrug-resistant tuberculosis (MDR-TB), a hard-to-treat bacterium that’s becoming more prevalent and can take two years to cure. Fewer than 5 percent of MDR-TB patients receive appropriate treatment.

Despite the burden of MDR-TB, few drugs exist to treat it. On December 28, 2012, the U.S. Food and Drug Administration conditionally approved bedaquiline as part of a treatment regimen for adults with MDR-TB. It is the first drug to garner FDA approval for MDR-TB and the only tuberculosis drug to come to market since 1970.

As World TB Day approaches, Partners In Health spoke with Carole Mitnick, a TB researcher and assistant professor of global health and social medicine at Harvard Medical School, our longtime academic affiliate and partner. Mitnick discussed the factors behind the dearth of new drugs, the benefits of community-based TB treatment models, and the myriad challenges associated with pediatric TB patients.

Q: First, can you explain the difference between tuberculosis, multidrug-resistant tuberculosis, and extensively drug-resistant TB?

The distinction lies in the drugs that are useful to treat this bacterial disease. TB is usually treated with a four-drug, six-month regimen. Upwards of 85 percent of people with TB can be cured with this regimen.

Multidrug-resistant TB is caused by bacteria that are resistant to the two most important drugs in the standard regimen, isoniazid and rifampin. Patients with this form of disease usually have to be treated for 18-24 months, with regimens containing at least five drugs. A lower percentage of patients with this form of TB are typically cured—on average just over 60 percent. Many others die. This is because the drugs are more toxic, less effective, and the disease is often more advanced by the time patients receive proper treatment.

In extensively drug-resistant TB (XDR-TB), the bugs are resistant to the two most important drugs in the standard treatment and the two most important drugs in MDR-TB treatment. These patients often receive treatment for 18-24 months, again with regimens containing at least five drugs, many of which are very toxic and of questionable efficacy. Cure is assured in even fewer of these patients—usually less than 50 percent.

Q: Is the number of MDR-TB and XDR-TB cases around the world increasing? Are certain regions becoming more prone to MDR-TB and XDR-TB? 

All signs point to a growing global burden of MDR- and XDR-TB. The burden is usually thought about in two ways: percent of all TB cases that are MDR and XDR or absolute number of MDR and XDR cases. Percentages are low in most of Africa and Asia. But the absolute number of TB cases is so high that MDR among small percentages translates into hundreds of thousands of cases of MDR-TB each year. Moreover, in Africa, the joint HIV epidemic leaves millions exceptionally susceptible to all forms of TB, and to repeated bouts of TB or MDR-TB. Aggressive treatment of both diseases, such as that provided at PIH/Lesotho, is essential to save individual lives and impact the epidemic.

In Eastern Europe and the former Soviet Union, absolute numbers of TB cases are low, but the percentages of TB cases that are resistant are extremely high and growing. PIH’s Tomsk, Russia, site is, however, one of the shining examples in the region. In the years since PIH intervened, the incidence of TB, the proportion of TB cases that are MDR, and the incidence of MDR have all declined! That’s largely from working with partners to develop a unique ambulatory model to serve prison and civilian populations in the region. 

Carole Mitnick, a TB researcher and assistant professor of global health and social medicine at Harvard Medical School. Credit:Suzanne Camarata

Q: Why has drug development, particularly for drug-resistant strains, been slow? Is there a lack of funding, a lack of scientific know-how, or political roadblocks? 

There are two primary contributors to this problem, which are linked. First, TB is a disease of the poor. The market for anti-TB drugs, largely governments in Africa and Asia, is not seen as a “paying market” with significant profit potential for the pharmaceutical industry, which is motivated by profits.

Second, advocacy for new anti-TB drugs was virtually non-existent until about 10 years ago. The prevailing attitude among those responsible for global TB policy has been that what we had—a six-month, four-drug regimen good for most patients—was the best we could hope for. The battle in TB control, its architects maintained, was simply about rigorous, widespread delivery of the existing tools: drugs that are more than 50 years old; a diagnostic that is now more than 125 years old; and a vaccine that is more than 100 years old. There was a mentality of scarcity among those most concerned about TB, which seemed to preclude demands for innovations in treatment, diagnosis, and prevention. Since drug and medical device research and development is a lengthy process, this drought of imagination has delayed harvest of new technologies for decades.

Q: How significant is the FDA’s conditional approval of bedaquiline?

This is exciting for three reasons. First, symbolically: The approval of the first new anti-TB drug in nearly 50 years is a huge breakthrough, demonstrating that at least one profit-driven company saw value in pursuing a TB indication. Second, it created a regulatory precedent for approval of MDR-TB drugs. Last, and most important, it means that there is an alternative to the current regimens that have high toxicity and inadequate efficacy. There is even the potential that this new drug, and others in the pipeline, could shorten treatment. This would be an important achievement for patients and TB programs currently struggling to complete two years of treatment.

Q: Have you see anything in the early studies of bedaquiline that raises red flags?

The primary issue that dampens my enthusiasm is safety. We know that bedaquiline has potential heart toxicity. And too few patients have been evaluated to really know how safe the drug is, across populations. It should be noted that in the small clinical trials, more patients who received bedaquiline died when compared with patients who received the placebo. This does not mean people shouldn’t get the drug; it merely reinforces that all people who receive this drug as part of an MDR-TB treatment regimen need to be assured the highest standard of care and vigilance while receiving it. 

Q: The FDA approved bedaquiline for adults. What about pediatric patients? What treatment options are available for children who have drug-resistant TB?

This is an enormously important issue. Anti-TB drugs have almost never been tested explicitly in children or developed for delivery to children. To comply with current FDA requirements for approval of bedaquiline, Janssen Therapeutics [the manufacturer of bedaquiline] has developed a plan to study new drugs in children. Rarely, however, do these plans get implemented. So, clinicians around the world treat based on their best guess for whether and how much of existing drugs to use in children. Pills are cut and crushed, capsules are opened, and medications are stirred into formula, juice, or food.

These practices are extremely imprecise and time-consuming. A TB nurse who works in a public health center that collaborates closely with Socios En Salud, our PIH sister project in Peru, estimated that it takes her a full day to create a week’s worth of doses for a single pediatric MDR-TB patient she is treating. What’s worse is that since children are thought to be “epidemiologically insignificant,” meaning they don’t tend to transmit disease, we have no idea how many children in the world actually have MDR-TB and what treatments they’re receiving. A year-old project by PIH collaborators at Harvard Medical School, called the Sentinel Project for Pediatric Drug-Resistant Tuberculosis, aims to answer these and other critical questions.

Q: Do you see foresee challenges to making bedaquiline available in resource-poor environments?

There are challenges, yes, but they are by no means insurmountable. We’ll need to subvert a tension that has plagued TB control efforts—that is, between providing the best treatment possible to all those who need it and a perceived need to protect against emerging resistance. TB policy has typically favored caution against resistance, which has meant restricting access to the most effective treatments. In contrast, in HIV, since treatment became affordable, the balance has mostly been on the side of providing treatment to as many as possible.

PIH and other partners working within a framework of equity and innovation will need to assure, first and foremost, that effective treatment is delivered widely. Our framework will need to complement the dissemination emphasis with safeguards that assure the new drug is used in a way that minimizes the risk of development of resistance and maximizes patient safety. This is completely consistent with the model PIH and our Haitian sister organization Zanmi Lasante piloted in Haiti, and then brought to scale in Peru; Tomsk, Russia; and Lesotho.

A patient in Lesotho with multidrug-resistant tuberculosis receives care from PIH/Lesotho staff. Credit: Pep Bonet/Noor

Q: Aside from slow progress on drug and diagnostic development, what other obstacles persist in fighting TB? 

Although approximately 500,000 new MDR-TB cases occur each year, a small fraction—less than 5 percent—are thought to receive appropriate treatment. Obstacles include weak healthcare systems without proper investments, collaborations with other sectors, or support to facilitate the distribution of drugs, diagnostics, and information. And we can’t ignore underpaid and overworked providers whose capacity to provide quality care is limited by failures to situate them properly to deliver the promise of health as a human right. 

Q: And what’s the concern over hospital-based models for TB care? 

Continued reliance on hospital-based models is guaranteed to stymie scale up of treatment because the need far outpaces hospital-bed capacity, by orders of magnitude. This gap manifests, in many countries, in MDR-TB treatment waitlists that are hundreds or thousands of patients long. The justification for hospital treatment is often to remove infectious MDR-TB and XDR-TB patients from the community. The deep flaws in this logic are that while awaiting treatment, both before and after diagnosis, these patients have been in their communities already infecting family and neighbors.

Furthermore, hospitals in high-burden TB settings rarely have effective infection control measures to prevent transmission to other vulnerable patients, family members, and staff. Lastly, effective treatment is the best prevention: Once appropriate treatment is initiated, the risk of transmission to others declines precipitously. This has been demonstrated most recently by PIH affiliate Edward Nardell, who presented such findings at the World TB Conference of the International Union Against TB and Lung Disease.

Q: What are some of the clear advantages to the community-based model?

Delivering MDR-TB care in the community—as PIH and partners do in Peru, Haiti, Lesotho, Russia, and Kazakhstan, among other sites—has many benefits, beyond the transmission ones described above. Among the most apparent benefits is that it’s less disruptive to patients and families. Community care also provides a platform for comprehensive services, including attention to the social and economic needs that almost always coincide with medical ones. Working closely with the community creates opportunities for education, which remove stigma around the disease and accelerate diagnosis of additional cases. The success of bedaquiline introduction, and global MDR-TB treatment scale up, depends on expansion of care from hospital to ambulatory models.

Charles Phiri was stuck in one of Malawi’s notorious downpours, steering a Honda XL dirt bike down a washed-out mountain road. Rain streaked across his visor. With every twist of the throttle, globs of mud splattered against his protective jacket.

“My most difficult ride,” Phiri, 30, recalls of the rain-soaked trip to Benje, a hard-to-reach village near the border of Mozambique. “[But] these patients would die if there was not someone to go out and visit them and encourage them to get back on treatment.”

As an HIV Treatment Coordinator for Partners In Health’s Malawian sister organization Abwenzi Pa Za Umoyo (APZU), Phiri spends countless hours traversing the Neno district to consult patients who’ve stopped taking their antiretroviral therapy. It’s a job that has become more demanding in recent years: In Malawi—the seventh poorest country in the world—approximately one in every 10 adults is living with HIV. In 2006, the year before PIH began working in Neno, only five HIV-positive people in the district were being treated with antiretrovirals. By the end of 2012, more than 5,000 people had access to the lifesaving drugs.

Phiri is a critical link in the chain of health care providers who help patients adhere to their daily regimen of pills by making home visits. “I talk to them about their lives, about why they have stopped their treatment,” he says. “I talk to them about the consequences of stopping treatment.”

Though remarkable in its simplicity, this approach works. Research from PIH-supported programs in Rwanda has shown that similar community-based care not only leads to higher retention and adherence rates among patients—meaning they stay in care longer and are more apt to take their drugs on time—it helps identify issues such as food insecurities and depression, factors that may compel people to stop taking medication.

But long distances between patients, not to mention inclement weather and few paved roads, pose challenges. To help Phiri and others reach patients in a timely manner, PIH/APZU teamed up with the nonprofit Riders For Health, which secured a handful of Yamaha AG 200s and Honda XLs—lightweight dirt bikes that are ideal for Neno’s terrain. Now the bikes allow PIH/APZU to cover nearly 7,000 kilometers each month.

Among the most tangible benefits of the bikes is that they’re far cheaper than larger, less fuel-efficient trucks. Every kilometer traveled in a truck costs 80 cents compared with 30 cents for a dirt bike. And the bikes are cheaper to obtain. Whereas a truck could costs tens of thousands of dollars, a dirt bike and the necessary training for one rider is only $5,550. 

“The bikes help free up our limited fleet of cars and cut down on gasoline costs,” Victoria Smith, external relations coordinator for PIH/APZU, said. “There are so few paved roads in Neno—for the most part the roads are packed earth and rock, and many of the routes to get to patients’ homes are mountain trails that intersect with rivers, fallen trees, and rocky hills.”

While all riders are equipped with a full-face helmet and protective gloves, jackets, and pants, the goal is to make sure these items are last-resort defenses. Before anyone jumps on a bike and heads into the field, they must pass a two-week training course with Road Safe, a Malawian driving school. After that, they enter a one-week program facilitated by Riders For Health that’s led by a retired professional long-distance motorcycle racer.

According to Phiri, the trainings instill a high level of confidence. “I never thought I was going to fall off,” he says when talking about the ride to Benje. “The road was muddy and windy, and I managed to stay on the whole time.”

With numerous riders trained, we’re now leveraging the nimbleness of the bikes to identify treatment gaps in Neno. Take for example PIH/APZU’s Geographic Information Systems Assistant William Mwale, who led a recent expedition to plot the precise locations of villages where the hardest-to-reach chronic-care patients live.

By cross-referencing the locations with patient data from an open-source electronic medical record system, PIH/APZU was able to build maps and measure the proximity of existing health centers to patients. The maps identify underserved areas where physical and/or socioeconomic barriers are likely to prevent people from accessing care.

And the dirt bikes help us get around at least some of those barriers.