Small Team, Big Impact: 15 Years of Better Care for Russian TB Patients

Posted on Dec 18, 2015

Small Team, Big Impact: 15 Years of Better Care for Russian TB Patients
PIH Co-founder Dr. Paul Farmer (left) visits a detention center in Tomsk, circa 1999, one of his earliest visits to Russia. PIH’s work on tuberculosis began there soon after. Photo by Sergey Gitman

On a September morning in 2000, inmates in Russia’s Tomsk Tuberculosis Prison lined up to take their daily medication. It was a familiar ritual for the men and prison staff coping with a tuberculosis epidemic. But today was different. Some of the men received new pills and vials in addition to their usual doses—medication that would treat multidrug-resistant tuberculosis, the more virulent form of tuberculosis they suffered.

These men would return for a second dose of the new medication later that day—and would do the same every day for the next two years. The drugs carried toxic side effects that made treatment difficult, but the prisoners had no real chance of recovering without them.

These unassuming pills—called “second-line drugs”—were a victory for Partners In Health staff, who had argued for years that tackling multidrug-resistant tuberculosis (MDR-TB) was nearly impossible without this medication. Staffers had also argued against conventional wisdom that considered poor patients too expensive to treat.

Working with their colleagues in Russia’s health ministries, the team established new treatment guidelines—to impressive effect. Deaths from tuberculosis in the Tomsk prison system dropped to zero within a few years, and the project’s success would have global repercussions—altering treatment of MDR-TB around the world.


Our work in Russia had begun two years earlier when George Soros’s organization, now known as Open Society Foundations, turned to PIH co-founder Paul Farmer for advice on the tuberculosis epidemic among Siberia’s prison population. An estimated 100,000 inmates had active tuberculosis, and possibly 30,000 were multidrug-resistant. Many were dying of the disease before leaving prison, and those who survived took it home with them. Soon it was on the rise in the civilian sector.Changing Mindsets, Changing Treatment

Because PIH had successfully treated people in similar epidemics in rural Haiti and Lima, Peru, Farmer had evidence that MDR-TB could be combatted in poor communities with treatment that included these second-line drugs.

“At that time in Russia, nobody talked about multidrug-resistant tuberculosis,” says Oksana Ponomarenko, PIH’s executive director in Russia. Treatment for the disease was not distinguished from regular tuberculosis.

Guidelines put forth by global health bodies at the time stated that MDR-TB should be treated only with “first-line drugs”—medication that was cheaper and more widely available, but essentially ineffective to resistant forms of the disease. Second-line drugs were more expensive and, therefore, not “cost-effective” in poor settings. For Farmer and other PIH staff, it was a double standard. Treatment should depend on a patient’s disease, not on the person’s ability to pay for it.

Russian ministries for the prison and civilian sectors and Tomsk Tuberculosis Services welcomed Farmer’s mission. “Everyone understood that the problem of multidrug-resistant tuberculosis was only going to grow,” says Ponomarenko. They wanted a solution. Farmer came with an intractable belief in what was possible. She recalls their first meeting: “I had a wonderful impression of him because he was so enthusiastic.”

Staff were equally excited. “Local doctors wanted to provide the best care. The question was how we do it,” says Salmaan Keshavjee, a senior tuberculosis specialist at PIH.

With drugs procured through the Green Light Committee—a multi-institutional partnership designed by PIH co-founder Jim Yong Kim—PIH and Russian colleagues set about answering this question. They had enough medication to start 630 patients on treatment in Tomsk. But the clinicians also needed to establish the best ways to treat them—protocols on which even the global health community lacked consensus.

The intricacies of treatment spurred heated debates. The new drugs had thrust together strong-minded clinicians and academics—all experts in the disease with very different approaches. They debated in “concilliums,” meetings where they considered each case and discussed everything from drug combinations, to helping patients cope with medication.

Gradually, arguments gave way to agreement.

“It was a lot of fun, actually,” remembers Michael Rich, a leading MDR-TB expert who was part of the PIH team at the time. “There was a lot of uncertainty, but when you’re sitting around the table at a concillium, there’s comradery.” More so, the group felt they were on the right track. “When we came to a consensus you felt much more confident that what you are doing for the patient is right.”

This became apparent early on. At the start of the program, tuberculosis mortality in prisons was about 380 deaths per 100,000 individuals. “Within a few years of us starting treatment of MDR-TB it had dropped to zero,” says Keshavjee. “It was remarkable.”

But their work didn’t stop there. Prisoners with MDR-TB were returning to civilian life and taking the disease with them—and there weren’t clear ways for them to continue treatment.

This was a complex challenge. Tuberculosis in Russia had always been managed in hospitals or facilities dedicated to the disease, not outside of them. Further, the Ministry of Justice, which oversaw the health of prison populations, did not coordinate efforts with the Ministry of Health, which covered the civilian sector.

PIH proposed they set up an ambulatory system that reached out to urban and rural areas to ensure patients still had access to medication. Soon the two ministries began to collaborate with PIH to set up innovative ways for patients to receive medication outside hospital wards. They developed three venues: at hospitals where patients would receive food and their doses; at polyclinics where they visited twice daily for medication; and at home.

The program’s success was clear. The most vulnerable patients who would not normally continue with medication—poor people or those suffering from alcoholism and other diseases—were finishing their regimens.

“When we started doing research and evidence-based alcohol interventions, folks in the hospital were very excited,” says Sonya Shin, a physician and associate professor at Harvard Medical School, who was a medical student working with PIH in Tomsk. “The reason we were able to do things like that is because they trusted us.”

PIH’s influence spread. In 2003, PIH expanded its work and began treating an additional 950 patients. Russia’s Ministry of Health established national guidelines for treating MDR-TB, differentiating it from regular tuberculosis. It was the first time the disease was acknowledged by the government.

Based on evidence that included PIH’s work, the World Health Organization released its first guidelines in 2006 for treating MDR-TB, prescribing comprehensive treatment including second-line drugs.

By 2012, the rate of tuberculosis in the Tomsk region had dropped by more than 40 percent from 109 to 63 per 100,000. PIH’s work in Tomsk also set a standard for the wider region and has been replicated in other regions of Russia, Eastern Europe, and Central Asia. Practitioners from across Eastern Europe and the former Soviet countries visit Tomsk for regular trainings on managing tuberculosis. The PIH Guide to the Medical Management of Multidrug-Resistant Tuberculosis is used around the world.

Partnership and collaboration won over prevailing wisdom around treatment. “It’s about building relationships,” Rich says. “It’s using academic and scientific evidence to do that. And I think it’s also negotiating and being willing to compromise and to find solutions.”

There is a lot more work to do. Russia still has one of the worst tuberculosis prevalence rates in the world, and because treatment remains costly, the disease continues to disproportionately affect the poor.

“Tomsk is an important lesson for the world. It was by no means a perfect program,” says Keshavjee, “but it actually showed us that you could stop tuberculosis in its tracks. If it’s possible to do this in the middle of Siberia, it means we can do it everywhere. That should be our goal.”

Read more about the daily care patients with tuberculosis and multidrug-resistant tuberculosis receive in Russia.
 

 

This work has been made possible in part through the generosity of the Eli Lilly and Company Foundation.

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