Learning from Experience

"HAART is no less miraculous in rural Haiti than it is in Boston."

-- Dr. Joia Mukherjee, Partners in Health

When Brazil committed to treat all of its HIV-positive citizens in 1996, it called upon a domestic drug industry that had been making low cost generic versions of expensive patented drugs for years. Reducing the cost of essential HIV medicines in Brazil altered the course of the epidemic there. AIDS deaths peaked in 1998 and continue to fall. About 100,000 people are currently receiving treatment and diagnostic monitoring in Brazil.

In Uganda, the number of clinics qualified to give antiretroviral therapy increased from three to ten over the past three years. Dr. Peter Mugyenyi "broke the rules" when he imported generic versions of HIV drugs, but today, he estimates, more than three thousand people in his country are receiving treatment. Recently Botswana and Gabon have joined a few other African nations who say they will strive to provide universal therapy. Still, the biggest obstacle facing all of these initiatives is the prohibitive cost of drugs and diagnostics.

In rural Haiti, a tuberculosis treatment program operated by Partners in Health is providing HIV drugs to about 70 people. With no recourse to CD4 counts or viral load tests this bare bones approach evaluates symptoms to make treatment decisions. Drugs are administered by directly observed therapy (DOT) with the involvement of community members. Compliance is good and once desperately ill individuals have returned to productive lives.

All of these efforts pressed ahead with what they had -- they did not wait for court cases, TRIPS compliance or the generosity of lawful patent owners to begin offering treatment and hope. Corporate controlled discount plans and drug giveaways have met with less success. Over a year ago Boerhinger-Ingleheim, the makers of nevirapine, announced a five-year plan to donate their drug to treat HIV-positive women in labor. But steep administrative hurdles meant that very little medicine was actually given -- and thousands of children were infected needlessly. Meanwhile, the initiative of one small non-profit organization, Global Strategies for HIV Prevention, has provided purchased nevirapine to several thousand mothers with minimal red tape.

Against this background of struggling but significant progress, large international health organizations have been meeting with industry, governments, foundations and community representatives to develop guidelines for the medical management of antiretroviral therapy in the developing world. Wide ranging opinions are debated at these meetings -- some maintaining that comprehensive healthcare should be in place before treatment arrives, others demanding full diagnostic monitoring or clinic-based DOT, and some arguing that low-tech syndromic management is sufficient. Every meeting begins with a recitation of how many lives will be lost, but who talks about how many lives have been saved?

How many would be alive today if industry had made affordable drugs available last year instead of stalling over theoretical points of law? How many new infections would have been prevented? How much larger would the foundation be for the next stage of treatment initiatives?

Perhaps the tragedy of this lost year is how much we failed to learn about what works and what doesn't. Can home care networks distribute drugs? Is DOT feasible? Are diagnostic tests necessary? Are side effects manageable? Does clinical recovery follow patterns seen in developed countries? Is additional nutritional support necessary? We can only learn about these questions through experience and operational research. And not every answer will work everywhere. The number of efforts needs to proliferate.

The experience of non-governmental organizations should also be reported. How many people has Medicins Sans Frontieres (MSF) treated with antiretroviral therapy since the International AIDS Conference in Durban? The World Health Organization? UNAIDS? Have drug-recycling programs been successful? What have we learned?

Most agree that a massive airlift of antiretroviral drugs with no plan for distribution is not likely to succeed. But while the big organizations focus on big solutions to the big problem, too little has been done on a small scale -- as if saving a few lives is pointless if you can't save them all. In addition to those few precious lives lost, though, we've squandered an opportunity to supplant theory with experience, creativity and insight from a broad range of many modest efforts. Let's do better next year.

Back to the GMHC Treatment Issues June 2001 contents page.