To End AIDS, We Must End The Stigma

December 1, 2013 3:30 a.m.

This piece is adapted from Dr. Paul Farmer’s foreword to the paperback edition of Love is the Cure: on Life, Loss and the End of AIDS by Sir Elton John out this week from Little Brown.

Thirty years after the advent of the AIDS epidemic, what have we learned about this disease and about ourselves as human beings?

On the first score, there’s cause for optimism about the power of scientific advancements and the potential for a new view of global health and clinical medicine. Three decades after the first cases of AIDS were reported, we have identified the virus that causes the syndrome and can block its replication. We have developed, and continue to improve, tools to diagnose and treat the disease. Astoundingly, we have delivered some of these advances to millions of the poorest and sickest people in the world — in Africa, in Haiti, in the remotest corners of Asia.

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But anyone wondering why, despite these advancements, there are still so many people living with HIV/AIDS today should look to the work of Elton John AIDS Foundation and others aiming to fight stigma in the battle to eradicate HIV/AIDS. Settings as diverse as the rural South in the United States, Haiti, South Africa, and Ukraine are the frontlines of the AIDS crisis today. From the work in these settings around the world, we begin to see solutions emerge.

I’m writing this … at our office in Rwanda. At the close of 1994, following the genocide that took up to a million lives, Rwanda was in ruins. Many of its hospitals and clinics had been thoroughly damaged or destroyed, others were simply abandoned, and a large portion of the health workforce had been killed or languished in refugee camps.

These settlements, especially those within Rwanda, were ravaged and thinned by cholera and other “camp epidemics,” as well as by AIDS, tuberculosis, and malaria. Child mortality rates soared to the highest in the world; malnutrition was rampant. Many development experts were ready to write off this beleaguered nation as a lost cause, a failed state.

Today, almost two decades later, Rwanda is the only country in sub-Saharan Africa on track to meet, by 2015, each of the health-related development goals that nearly all the world’s countries agreed upon thirteen years ago. More than 93 percent of Rwandan infants are inoculated against eleven vaccine-preventable illnesses. Over the past decade, death during childbirth has declined by more than 60 percent. Deaths attributed to AIDS, tuberculosis, and malaria have dropped even more sharply, as have all deaths registered among children under five. Rwanda is one of only two countries on the continent to achieve the goal of universal access to AIDS therapy; the other is far wealthier Botswana.

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There’s still a long way to go. But these are some of the steepest declines in mortality ever documented — anywhere and at any time in recorded history. If that’s not a big-time reversal of fortune, I don’t know what is.

This has come to pass for many reasons and with the help of many partners. Some of the improvement in Rwanda has occurred because the global pandemic of neglect is also being addressed. The U.S. government is far and away the largest single funder of AIDS treatment programs in Africa. Indeed, simply by doing the math we see that many Americans now support efforts to build programs that can save lives, improve health, and prevent discrimination in all its forms.

But Rwanda’s rebirth has come to pass most of all because of good leadership here and sound policies in development, in public health, and in clinical medicine. It has come to pass because some of Rwanda’s leaders, including its health minister, have joined civil society groups to fight discrimination with legal remedies, with activism, and with an effort to realize the right to care. And much of this improvement has occurred among the poor and in the country’s rural reaches, traditionally neglected by governments and by medical professionals, but also by human rights groups and nongovernmental organizations.

Building a proper health system offers care providers the chance to be more effective and humane. Working as a doctor in places as far-ranging as a Harvard teaching hospital, a clinic in rural Haiti, and even a prison in Siberia has taught me something that Elton John learned by acting on his empathy, year after year and in country after country.

Context matters and people are different, but they are much more the same. The aspirations of our patients — to receive care, to feel better, to be heard, to help friends and family members, to get back to work or to return to school — are universal. Too many of these aspirations are dashed not only by serious illness but also by local poverty and social inequalities of many sorts. All of these pathologies need to be attacked with resolve, resources, and a clear commitment to a human rights agenda that links our quest for a right to health care to respect for the rights of everyone to live free of any sort of persecution or disdain. This is how to battle stigma.

All of us, regardless of background, will one day need effective care just as we need respect and compassion. We cannot assume that others, including the AIDS activists to whom we owe a great deal, will do this hard work for us. We also cannot assume that compassion and respect by themselves will yield a cure, let alone the eradication of AIDS. Clear policies must be implemented on a global scale — policies that are effective, that save lives, and that can be scaled. We should all be haunted by the realization that, in many instances, the global community has decided simply not to fight this disease with the best weapons available.

Twenty years ago, Rwanda was the most troubled nation on Earth. Today, it is one of the most hopeful. The work of Partners In Health, other activist groups, and all those striving to end AIDS has taught me that there is no such thing as a hopeless situation, no such thing as a lost cause. Such is the case with the AIDS epidemic at large.

Copyright   2013 by Paul Farmer. This piece is adapted from Dr. Paul Farmer’s foreword to the paperback edition of Love is the Cure: on Life, Loss and the End of AIDS by Sir Elton John out this week from Little Brown.

Dr. Paul Farmer is the co-founder of international social justice and health organization Partners In Health (PIH). His latest book To Repair the World: Paul Farmer Speaks to the Next Generation was published this month.

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