Notes from the "Haiti Workshop on Expanding AIDS Treatment and Care in Resource-Poor Settings: Moving from Models to Implementation"
by Joia S. Mukherjee

On April 13-16, 2003, a meeting was held in Haiti to discuss HIV therapy in resource poor settings, "Haiti Workshop on Expanding AIDS Treatment and Care in Resource-Poor Settings: Moving from Models to Implementation"

The idea for this meeting was hatched in Cange, Haiti one night in August at the Health and Human Rights Forum about which I wrote to you...

At the August conference, Dr. Bruce Walker, Head of the Harvard Medical School Division of AIDS...realized that what was happening in Haiti, in terms of AIDS treatment, knew, as we do that this treatment was unique in all the world...He was not the first to realize this however, here in Haiti, our AIDS work was among the first recognized by the Global Fund to Fight AIDS, TB and Malaria..and, after 5 years of building the model of Highly Active Antiretroviral Therapy (HAART) in a resource poor setting like Haiti...after many failed attempts to get money for the treatment of the destitute poor with HIV...the Global Fund to Fight AIDS, TB and Malaria allowed us to expand..from 50 to 450 patients -just in anticipation of the Global Fund money...and to 5000 or more over the next five years with the help of the Global Fund to Fight AIDS, TB and Malaria; to provide HIV treatment to everyone who needs it in Central Haiti.

Our work in Haiti-the expansion of AIDS prevention and treatment throughout central Haiti--- is not only AIDS treatment--as amazing as that is in bringing life to people who were nearly dead-but this work is a social movement, the force of a paradigm shift... a force that is pushing the notion that poor people deserve care. The Global Fund represents this paradigm shift...it was created with the notion that real care, care that is good and decent and meaningful.. care that will save the lives of the sick, that will allow people to return to health, to farm their fields, to send their children to school.... this care, AIDS treatment, can be done .....well, no...excellently, in a place as poor as rural Haiti.

So the idea was born....to bring a bunch of AIDS experts from all over the world to Cange..

and soon... before Rome burns.. before another 3 million perish.. before a year had passed and before we meet again in Cange to talk about health and human rights...

And so we did..

PIH with Division of Social Medicine and Health Inequalities and the Harvard Division of AIDS, GHESKIO (the famous Haitian group for the study of Kaposi's sarcoma and opportunistic infections) and Cornell University....we organized a conference to point to Cange and say... "Here it is, pragmatic solidarity"...

And the experts came...starting Sunday April 13th to Port au Prince: 110 of them!!!

HIV "giants" from the US such as Marty Hirsch, Bruce Walker, Chip Schooley, Connie Benson, Gwendolyn Scott, Warren Johnson, Rich D'Aquilla, Spyros Kalams

the Haiti HIV giants --Bill Pape, Paul Farmer and the "girl giant"--as she called herself--Marie De Champs

international experts such as Joep Lange the president of the International AIDS Society, Kathleen Cravero the deputy director of UNAIDS

major funders--Mark Dybul from the Office of AIDS research, Pierce Gardner from the Fogarty International Center, Joe O'Neil from President Bush's HIV initiative and Jack Chow, the US representative from the Global Fund

...oh and by the way we had two congressmen--Jim Mc Dermott from Seattle and Sherrod Brown from Ohio brought by our wonderful friend from Results International--Joanne Carter

....in Haiti, last week, 13 countries were represented: Haiti, the Dominican Republic, Brazil, Jamaica, Holland, England, France, Switzerland, South Africa, Malawi, US, Scotland, and Cuba ...the lavish, other-worldly Hotel Montana was the venue.

On Sunday night, a spirited discussion occured about the standard of care for pregnant women-AZT is notenough!! chimed in the US experts who were genuinely surprised that tripletherapy was not the standard of care in the developing world...

On Monday the GHESKIO team, presented their "research findings:" the natural history of HIV is bad, fatal, lethal...and treatment saves lives...

each presentation was set up to show the natural history and the difference that treatment makes...and how they will convert the Global Fund capital into lives saved...

a dinner of dancing and celebration followed..how could it not

The next morning, at the crack of dawn, the visitors headed "up country" leaving the comfort of the Hotel Montana's cool garden to the central plateau: where the forbidding earth has teeth, where the Zanmi Lansante's oasis of hope awaits ...not sleeping at 5 am, busily preparing for the "experts"...and with this preparation, there is a sense, among the accompagnateurs, among the patients, doctors, nurses, the cooks, the laboratory staff, the logistics team...that we are...actually, the experts...and the team is excited for the opportunity to show our stuff...to show the expansion that has taken place since the news of the Global Fund came to central Haiti.

In Cange, the church is prepared, palm Sunday décor is removed and replaced with posters about AIDS, books about AIDS, books about poverty, pictures of patients, the Cange declaration...The church is converted into a conference center...which is still..a holy place, perhaps even holier for what it says....our patients have risen from the dead

In Lascahobas, the first public clinic dedicated to HIV and TB, the team readied itself for the inauguration bythe First Lady...to show the new lab, the ability to do CD4 counts-critical tothe monitoring of AIDS patients..the new inpatient beds...the new space for the flood of patients that now receives care under the ZL-Haitian Ministry of Health Partnership...many of us walked away with green specks on our clothes from brushing by the fresh green paint..

Patrice Nevil, head engineer..weary from working all night for several...smiled... "we got it done." The visitors arrive, the ribbon is cut (with a saw...but just a small detail) and the visitors, head to Cange...a bit unsure of why they were brought to Lascahobas-nearly an hour past Cange...without the understanding political capital this partnership gives -- to the poor, to those fighting for HIV treatment in a country without resources...but the patients and the staff understand...the construction workers understand...ZL understands...solidarity and free care for HIV and TB is spreading across the Central Plateau... "we got it done"

In Cange, the First Lady and Paul arrived by helicopter greeted by Father Lafontant and Met Prosper.

the "Cange Philharmonic" salutes Mme. Aristide

Some of our star patients, now health workers themselves..Ti Ofa, Adeline, and Samuel...greeted the first lady..and thanked her..for her support: support for the poor, support for the fight against AIDS..and one of the teachers in Cange thanked her...for bringing electricity, as promised in August, to Cange...saying that the poor of the Arbonite Valley, finally, after 47 years, got the benefit of the dam!! Cange is quiet and peaceful now without the generators blaring..

And Dr. Maxi-the head of the Women's Health Program MC'ed the show in his wonderful style...compelling the experts to listen... To listen to the early steps of the Global Fund expansion....changes in case finding that occurs when there is access to treatment and hope; the movement of HIV drugs throughout the forbidding central plateau; the network of high speed internet and medical records that now link ZL and Ministry of Public Health staff across central Haiti. And..to the fact that HIV care IMPROVES basic health services...Expecting more, means...getting more!! The Global Fund expansion has improved the delivery of basic health services...TB case finding, provision of prenatal care, the provision of primary health care....

Meanwhile, the cooking staff, who without peer prepares 2000 meals a day..now had to prepare food for 110 rich people...blancs, special people...for whom they prepared 20 cauldrons of rice, an entire coop of chickens...made pastries and juice...and after lunch..the heros came on...

The accompagnateurs..the ones who walk, with all of us, through the complicated journey we face fording up the steep gradients of inequality to put those magic medicines in the mouths of the sick.....The crowd was impatient to meet these heros...but of course, the accompagnateurs could not start their talks 'til night fall, after their long day was done, after the medicines had been given to the 450 patients across the central plateau who are now receiving life saving therapy, after they took their own medicines or fed their children or worked in their fields..but, they came..after night fall..to teach the world..

...the accompagnateurs spoke, took questions, and told us... "we won't ever stop" giving the patients their meds... "of course they are sick, so they need us, their accompagnateurs, throughout their lives"... "we don't just give them medicines, we joke with them, we pray with them, we have them to our house, we watch their children" "we know, that having this disease is a burden, we help them with the burden" said the most seasoned accompagnateur who has been with ZL since 1986.

Our PACT chief Heidi Behforouz-the session's discussant, talked about our the Roxbury, Massachusetts HIV project, and our accompagnateurs, here in Boston, and how much we have all learned at PIH, from the ZL team, from the Haiti accompagnateurs-about HIV, about treatment, about respect for human life and dignity, about what it means to "accompany" a person with a life long illness like HIV.....

Joep Lange, the head of the International AIDS Society, closed... "This is the model, this gives us hope..this is how we will move forward, this is how AIDS will be tackled throughout the world."

And I realize that I am just doctor....the accompagnateurs are heros

To me, one of the thoughts that comes to my mind about the trip to Cange, about HIV treatment for the poor, indeed about all the work PIH is doing throughout the world, is that this work represents a paradigm shift in public health..the movement says that rights and dignity are the fundamental driving force for development..for health...for society..and that no longer will just " cheap stuff for the poor" be considered the appropriate technology or the currency of public health...this paradigm shift starts in the daily work of the accompagnateurs...

In 1962, Thomas Kuhn, an expert in the history of science wrote of paradigm shifts in his book, The Structure of Scientific Revolutions, that, "advancement is not evolutionary, but rather is a series of peaceful interludes punctuated by intellectually violent revolutions in which one conceptual world view is replaced by another."

We are advancing, we are expanding-with the help of the Global Fund to Fight AIDS, TB and Malaria...we are changing the conceptual world view...

I will end this report from Cange, from an oasis of hope in the desert of the suffering of central Haiti and indeed of the poor world... with a quote from a great person...our dear Loune Viaud, in her acceptance of the RFK Human Rights Laureate award,

Do the sick deserve the right to health care?
Do the naked deserve the right to clothing?
Do the homeless deserve the right to shelter?
Do the illiterate deserve the right to education?
The group I represent is Haitian, American, Russian, Mexican, and Peruvian.
It is the family that constitutes Partners In Health,
the group I have served and helped to build for all of my adult life.
We all believe the answer to each of these questions is a resounding YES.

And oddly enough...the fact that we believe the answer is, "yes" and that we fight every day for human dignity and that we hold the fight up as an example for the 'yes' as we did at the conference in Cange last week, IS an intellectually violent revolution, one that is at the heart of the new initiative of the Global Fund, a revolution in which the world assumes the collective responsibility to lessen the burden of HIV from the backs of the world's poor... and a revolution which can and will move others to action.

In solidarity with the real heros-
the accompagnateurs,
the cooks,
the teachers,
the outreach workers,
the construction workers,
the nursing staff,
the patients who work for the poor even as they are sick and poor themselves ...
all the people who made this conference a model for the world.

With love and peace

joia

Joia S. Mukherjee is a member of the faculty in the Department of Social Medicine at Harvard Medical School and works with Partners in Health in Peru, Russia, and Haiti treating patients with tuberculosis and HIV and advocating for the equitable medical treatment of the poor.