An excerpt from Moving Mountains: The Race to Treat Global AIDS, Verso, 2006, List $23.00
It was a rare afternoon of political stability on the island. It was extremely humid. On the radio, different Carnival bands were competing to have their song declared the best. Back downtown near the National Palace I'd left several friends from New York whom I'd met through the activist network ACT UP -- the AIDS Coalition to Unleash Power.
For my generation, ACT UP served as a crash-course on activism. By taking to the streets to risk arrest, ACT UP had achieved many victories related to access to life-saving medicines. It launched its first protests against the high price of AZT, a former cancer drug approved for AIDS in March 1987 -- at a cost of $10,000 a year. Ronald Reagan was in office then, and 20,000 Americans had already died of AIDS. ACT UP had helped focus my activism, while the politics and science of AIDS shaped my personal and professional life. I shifted from international reporting about politics and human rights in Haiti and elsewhere to covering gay issues and AIDS in America, and related social justice battles. Now and then, I reported on the Haitian AIDS crisis, which was generally ignored by the mainstream US media, as was Africa's, until the late 1990s.
In Haiti, the death toll from AIDS in 1987 can only be guessed at, but no one was getting AZT, unless they were the wealthy children of the elite who'd gotten their hands on a few months' supply of the drug. I'd begun tracking the epidemic there in 1984, and, to this day, Haiti remains my lens for viewing the global epidemic. My father was born there and the family's roots go far back; my extended family still lives there. I spent many childhood summers in Haiti and grew up with an acute awareness of the repressive political climate of terror that existed under "President for Life" François "Papa Doc" and his political goons, the infamous Tontons Macoutes militia, and his successor-son, Jean-Claude or "Baby Doc" Duvalier.
I did my first reporting in Haiti, covering political events and the grassroots pro-democracy movement. In 1987, Haiti began a long dechoukaj -- or uprooting -- of the thirty-year Duvalier dictatorship. Baby Doc and his wife were sent packing to exile in France, having looted the national coffers. The streets and shantytowns were filled with the victims of political violence. AIDS might have been killing more people, but they were hidden.
By then, a handful of Haitian doctors I knew were doing their best to treat severe cases of pneumonia, diarrhea and skin cancers that, in a matter of months, laid waste to young men and women already weak from malnourishment and chronic diseases like malaria, tuberculosis and waterborne parasites. I recall how hard it was to spot AIDS cases among the emaciated, sweaty patients batting away flies in the public hospital. Whenever I was in town, I'd stop by the AIDS clinic on Rue Berne, where my doctor friends would decry the silent epidemic they were battling with limited medicine and almost no support.
Outside of their clinic, the hospital and the morgue, the epidemic was not on the global or domestic radar. AIDS was something whispered about, la maladi katrach -- the four H's -- for the four groups first identified as targets: homosexuals, hemophiliacs, heroin users and Haitians. It was linked with prostitutes and masisis -- queers -- two stigmatized groups. There was little government talk of AIDS. Families turned their sick children out, husbands blamed their wives, and many AIDS patients died alone in hospitals, shunned even by fearful hospital staff, according the Haitian doctors treating the early epidemic.
Today, the taboos surrounding discussions of sexuality continue to shroud AIDS in Haiti, a country steeped in catholicism and voudon, an animist religion. It's common for gay and bisexual men to live closeted lives, to marry and have children in order to fulfill parental expectations. Stigma prevents those who are ill from risking disclosure to seek HIV testing and care until they are quite ill.
That was the reason I was driving up away from the pre-Carnival party downtown to a quiet house in Delmas, where a human rights worker I'd never met, a friend of a friend, was sick. As someone working in AIDS, I'd been asked by a colleague to stop by, to see what I could do.
What I found there is seared in my memory. His wife, an intelligent, composed young woman, led me to the dark inner bedroom of a small house where her husband was dying of AIDS, though no one uttered the word. A half-dozen people from the neighborhood were sitting beside his small bed on stools and overturned buckets, praying softly and chanting.
The man was standing up in bed, semi-naked, wild-eyed and delirious. He eyed me with suspicion and fear. Who was I?, he asked his wife, confused. Was I Legba -- the voudon guardian of doorways and barriers? I was wearing a straw hat, a Carnival souvenir. Was I Baron Samedi in my hat -- a symbol of the dead (and not coincidentally, of the elder dictator François "Papa Doc" Duvalier)? The people in the room smiled, embarrassed.
The wife calmed her husband down. She introduced me as someone from America, from a Haitian family, who knew about medicine, who wasn't a doctor but might be able to help them. She made me feel his head: he had a very high fever and was trembling, he was hotter than the sweltering room. She explained that he'd already been hospitalized for weeks. There was little the doctors could do for him besides relieve his pain, she'd been told; they had no more medicine. He was kondane -- condemned. Her husband's family, peasants from the interior, didn't like being at the hospital. If he was going to die, she wanted him home.
Away from the scene, I told her what I knew about the treatment of latestage brain infections linked to AIDS. I'd come empty handed, with no warning of what to expect. I left her with the name of another doctor who promised to come up as soon as he could to see this man. The next day, I dropped off vitamins, strong painkillers and, at the insistence of my friend Jon Greenberg, a believer in holistic therapy, ampoules of injectable liquid vitamin B-12 that ACT UP friends with HIV thought helped brain function. Jon was using this experimentally to boost his own depleted immune system. I promised to send better medicine back as quickly as I could. But it was too late. The man died seventy-two hours later.
Today, the great majority of people living with HIV and AIDS -- 28 million -- live in sub-Saharan Africa, the world's poorest region. In some countries -- like South Africa, the hardest-hit nation -- infection rates top 70 percent among some groups of young women. In Botswana, where 40 percent of adults are affected, adult life expectancy has fallen from seventy-three to thirty-seven years. AIDS has wiped out entire families and villages, and left no sector of society untouched. The epidemic has so depleted the workforce of southern Africa that several countries are headed into negative economic growth due to a decline in productivity.
These are numbing, staggering statistics; the numbers become abstractions. But each one is a life, a member of a family. Whenever it gets too big, I break it down, think of this person I met or that one. With drugs, they could be alive, they could be pulled back from madness or blindness -- another symptom of untreated late-stage AIDS.
Life wasn't great for her in Baltimore. Back in Malawi, she'd worked in a government ministry, been relatively well paid, and supported others. Now she had no money and couldn't legally work. It was painful to accept charity, she said, but she'd done it to survive. She lived in a small apartment with her son. She was lonely and she worried daily about her relatives back home. Several had died; others were battling the virus. None had treatment. Years back in Malawi, she'd been given up for dead; they'd planned her funeral. By luck, she'd gotten her hands on some recycled antiretroviral medicine, a few weeks' supply. Two drugs at first, then three. It did the trick. It got her on her feet. She later ran out, then got more. It wasn't the prescribed way to take AIDS medicine, it wasn't the way Western doctors recommended to avoid resistance or drug failure, she knew, but she'd done it and she'd recovered. Her son, now college age, was not an orphan -- yet.
When I later saw her walking with a cane, suffering from early deterioration of her hip joints -- a serious drug-related side-effect emerging in some patients after years of therapy -- she waved away my concern. HIV was no picnic, she reminded me, nor were the medicines. Eventually, she might need a hip replacement. But she was undaunted. She'd walk again, go back to Malawi, soon, start a treatment access program there.
In her wheelchair, she attended the Thirteenth International AIDS Conference in Durban, South Africa in 2000, a turning point in the global fight to access medicine. At a protest rally organized by South Africa's Treatment Action Campaign and ACT UP -- the first major AIDS protest on African soil -- she grabbed the microphone, pointed to a building behind her where World Bank officials and drug company experts were discussing the cost-effectiveness of global AIDS treatment, and shouted to a sea of African faces like hers: "There is a crime being committed here! You cannot have 42 million people dying and have the issue be about money!"
In truth, the drugs are too costly for many US patients, too, and there are waiting lists on the federal programs that provide these drugs for those who lack insurance. Most people get the drugs through their employee insurance policies, but many don't. HIV causes disability, and that can lead to unemployment. One thread that connects the access issue in rich and poor countries is poverty, which is linked to AIDS and other diseases of the poor like tuberculosis, and in Africa and Asia to malaria and sleeping sickness.
Scratch the surface and the AIDS access battle reveals a single, ugly motive: profit. That's what has led the big drug companies to charge so much for their drugs, yet block competitors from selling generic alternatives at a fraction of that cost. There are billions to be made. Patents and international trade laws are the instruments used to keep AIDS and other essential medicines from reaching Africa. It's important, then, to see AIDS as not merely a medical or public health issue, but fundamentally a social and political one. That's why AIDS activists adopt the language of human rights and social justice to discuss the access battle.
I began this reporting after the 2000 street protests in Durban, which put the issue of global AIDS center-stage in the world's consciousness -- where it has remained. At that time, the question of whether to treat was still being hotly debated. Many skeptics were demanding concrete proof -- hard clinical data
This book focuses on the frontline efforts of pioneering groups who established pilot programs in the months following Durban. I wanted to chronicle the first steps -- and missteps -- of these groups in order to identify some of the key ingredients of their success or failure. By looking at what was happening in rural hospitals and community clinics, in the field, in prisons, in the halls of government, in classrooms, and in the bedroom, I hoped to offer an early litmus test of our collective progress so far.
I was particularly interested in efforts to educate and mobilize communities around treatment, and whether this would in fact help break down stigma. I wanted to see how treatment was impacting on the lives of the first lucky few, like Chatinkha, who accessed drugs. I wanted to focus on where the gaps existed between blueprints and funding promises versus concrete action and commitment, where the hurdles were proving greater or smaller than expected.
This book does not aim be a comprehensive survey of the global AIDS epidemic. It looks more narrowly at the myriad challenges -- political, social, medical, technical, cultural -- to delivering therapy, and to issues related to disease control and the capacity of nations to mobilize their civil societies and health sectors to deliver accelerated access to AIDS medicines.
The management of HIV is complex in wealthy countries with state-ofthe- art tools. It is far more difficult in impoverished Africa where HIV rides on the coat-tails of endemic co-diseases like tuberculosis and malaria. How would doctors cope with fewer resources and without tools such as HIV diagnostic tests? Would new, simpler daily drug regimens and alternative treatment guidelines for managing HIV in limited-resource settings prove useful to patients and doctors in the field?
Each chapter reflects this unfolding story at a particular time and place, offering a multifaceted view of the fast-changing landscape of global treatment. I visit projects in a range of countries and different geographic settings. I compare public and private programs, urban and rural programs, government and community-based programs. I also look at how treatment programs are linked to prevention, vaccine and research efforts.
In each country I focus on a specific issue, angle or obstacle that is critical to HIV treatment there. In Mexico, for example, I look at the issue of infrastructure, as well as the challenge of delivering treatment and care in urban versus rural settings. In Haiti, I also look at the infrastructure question, but focus on an innovative strategy being used to help poor villagers adhere to their daily regimens -- Directly Observed Therapy. In Uganda, which has attracted attention for national prevention efforts, I study mother-to-child transmission, trying to gauge whether MTCT prevention programs will indeed provide stepping stones to treatment in adults. In India, I look at the emerging generic AIDS drug industry, and the issues that underlie the bitter competition between multinational drug companies and the Indian upstarts.
I am also interested in the experiences and needs of women, sexual minorities, drug users, prisoners, youths, and other vulnerable groups. Russia provides a close look at a fast-moving epidemic that is crossing over from high-risk groups to the general population. I also examine the frontiers of HIV science and research, to determine the potential impact of future threats on developing countries.
With new money pouring into the international AIDS arena, it seems like everyone is beginning to chase research and treatment dollars -- be they scientists, public health officials, agencies, physician groups, non-profit organizations, community and activist groups. What matters most is how new programs will directly benefit those living with HIV and AIDS, and those very ill or dying in hospitals or bedrooms, desperately waiting for medicine. With new groups at all levels entering this fast-growing arena, I want to know who they are and what role they may play. I am concerned that while the expanding field of global AIDS offers fresh opportunities -- funding, programs, jobs, influence -- to established and new groups, it will inevitably lead to negative competition and lack of cooperation between frontline groups. This could easily lead to a duplication of efforts and a squandering of precious resources rather than the unified action that is needed. That scenario has played itself out in richer countries, and it would be foolish to expect anything different in much poorer ones, where the fight for resources is even more intense.
For now, provision of the money and resources needed to carry out the monumental task of the global treatment rollout is growing, but remains completely inadequate. That makes the odds of achieving an overall victory impossibly high. It also makes it unrealistic to hope to predict accurately the long-term outcome of the global effort. But a close look at the money, groups and agendas can give a rough picture of what we can expect in the short term.
How quickly this commitment translates into action, into medicine getting into bodies through sustainable, effective national programs, remains the burning question. Much will depend on the openness and ability of political leaders and health officials who are developing comprehensive AIDS programs to learn from each other's mistakes; and on their national commitment to medical treatment and a range of steps that will help assure greater access for citizens.
And what about those with HIV? How will poor rural Haitians and Mexicans and Ugandans and others in developing countries manage HIV treatment-for-life? How well will they adhere to simplified regimens? Will we see a global version of what occurred in the US and Western Europe, where ARV drugs quickly cut the AIDS death rate and extended survival to patients? Or will the chronic lack of basic life resources -- food, water, shelter, jobs -- prevent such miracles from being repeated in poorer countries?
There are also problems associated with long-term use of potent but toxic AIDS therapies in richer countries, including drug resistance and serious side-effects. These side-effects include lipid and metabolic problems that cause damage to major organs like the liver, pancreas, heart, and kidneys. Studies show the risk of developing drug side-effects is linked to the length of time on therapy. So we may not see such problems in Africa for a few years, but what about down the line? Will people there also develop resistance to new simplified regimens being introduced, and then require alternatives? What if substitutes aren't available?
In a later section, I'll look at the myriad treatment challenges that physicians and individuals encounter in poor settings. As my field reports illustrate, these offer a glimpse of what new problems could crop up, and what life on HAART -- highly active antiretroviral therapy -- may be like in these countries.
If treatment-for-life is going to succeed, we need to develop and implement such plans and programs soon to ensure that the initial benefits of therapy are not short-lived. That means looking squarely at the potential global downside of treatment, not just the miracles.
In other words, what if the grand plan fails? Or the big money doesn't fully materialize? Or begins to flow, then is delayed or stopped, as frequently happens when programs rely on outside funding? What if treatment succeeds in some places, but not as well in others (a likely scenario)? How well can any region contain HIV, if the epidemic is poorly controlled in neighboring countries?
As the recent lessons of SARS remind us, viruses know no borders in a world of globalization and fast travel. What occurs in Dar es Salaam can affect what happens in Bangkok or Moscow. Looking ahead, will ever-wily HIV -- with its proven ability to quickly mutate, recombine into new substrains, and lie dormant in the body for a lifetime -- gain the global upper hand? Instead of disappearing or being controlled by drugs, will HIV eventually follow the path of other global diseases of the poor like tuberculosis and malaria, and in time become resistant to the current drug arsenal? By then, will new weapons be available in Africa or Haiti?
Compared with AIDS, there is little social stigma attached to SARS, perhaps because SARS is not viewed as a sexually-transmitted disease. There is fear of contagion and illness, but it is not linked to a moral judgement of human behavior. It is striking to note the difference in the world's response to these two global threats. Although Chinese officials initially covered up the SARS epidemic, global health officials issued an emergency call for all nations to respond to what they viewed as a threat to global public health. SARS was a matter of concern to all citizens, while AIDS is still viewed by many as a disease that is punishment for a sexual or other transgression from the social norm.
As we look to the future, no one can predict which new doomsday scenarios may emerge with AIDS or HIV, or where they will occur. But it's safe to assume that if funding or programs are started then abandoned, if political and civic leaders fail to unite or act responsibly, if stigma continues to prevent people from accessing testing and care, if drug companies block generic manufacturers, if privatization weakens public health systems, then such scenarios present a considerable risk.
To quote Paul Farmer, a pioneer of AIDS treatment in Haiti, "You'll always find people looking for excuses not to act, and AIDS is no exception. I find they're usually the people holding the purse strings. That doesn't make them right in my book, it just makes them greedy." Farmer was speaking to me in 2001, when his own project was just beginning to get global recognition. Like many in the trenches, he casts the access issue in moral terms of justice and health equity.
Yet Farmer is the first to acknowledge that it's harder to treat HIV in poor settings than rich ones. The extreme poverty of people in some countries makes the task of fighting and controlling any disease a complex endeavor, one linked to issues of national, regional and local development. How can one ask individuals to take AIDS medicines when they don't have enough food or clean water to swallow their pills? That's a question I wanted to ask in Haiti, where I know people don't eat every day.
As Farmer and others argue, infrastructure can indeed be developed, but it requires money, materials and human resources. In many countries there are resource gaps of all kinds across the board: not enough hospitals, clinics, trained doctors, nurses, basic medicine, affordable tests to deliver care to those living far from cities; not enough roads, warehouses, trained patent officials, pharmacists to procure, register, store and deliver drugs; not enough telephones, dependable electricity, refrigerators, computers, and other physical infrastructure to test thousands of blood samples and provide immediate results to patients; not enough of an industrial base or trained engineers or chemists to embark on local manufacturing of generic HIV drugs and make it cost-effective; not enough teachers, educators, lay counselors, and community organizers to take on the urgent task of educating and mobilizing local communities to take charge of their own care.
Instead, sub-Saharan Africa has been, and remains, under siege. So do parts of Asia and Eastern Europe, where the degree of overall poverty and development may be less severe, but still leads to limited or low-quality health and HIV services for the poorest citizens. In the hardest-hit countries of southern Africa, like Botswana and South Africa, a critical percentage of the very workforce needed to administer AIDS programs, deliver care or educate people about HIV has died or is ill: civil servants, doctors, nurses, technicians, midwives, teachers. Time and money are lacking to quickly replace and train a new generation of professionals. That spells a diminished human capacity to carry out the national AIDS effort.
Treatment education and literacy -- including cultural literacy -- are also critical factors in developing a national response to AIDS. This is challenging due to the diversity of populations, with so many languages spoken. It's not enough to provide information about HIV and drugs, but to make sure the information can be understood, is culturally sensitive, and addresses the educational needs of target groups. AIDS requires a discussion of the body, sexuality, identity, social attitudes toward healing and illness. Here again, the experience and resources of the West require translation, adoption, and redefinition to fit an African, Asian or other cultural model.
There are myriad challenges in maintaining good health, particularly in settings where daily survival is the name of the game. But many of the supportive elements that are taken for granted in rich countries are missing for patients in the poorest settings. The denial of AIDS has affected mainstream society. HIV is not talked about openly. Instead people are stigmatized and face fear, hostility, violence and overt discrimination. Those on treatment are likely to hide this aspect of their lives from neighbors and even loved ones to avoid being stigmatized. Right now, there aren't support groups for those with HIV in many countries, and relatively few mental health services have been developed with AIDS and HIV-positive individuals in mind. Along with drug therapy, the provision of mental health needs to be introduced into the formula. What it looks like will reflect social and cultural practices in different communities.
Ethics present yet another challenge. Up to now, people with AIDS who are receiving treatment have often been excluded from the decision- making processes that greatly affect them. A far greater effort is needed now to bring their voices into the discussion, at all levels of planning and administration. I knew this from the experience in the US, where people with HIV had to fight to get onto the review boards of clinical trials, and inside closed-door meetings to discuss drug development with manufacturers.
Right now, those with the most at stake in relation to treatment are individuals at death's door and their loved ones. After a few weeks on therapy, they are likely to regain their health, and then they need jobs, training, housing and other services -- just like other citizens, except that HIV provides an extra challenge. Without housing or work, it becomes that much harder to care for yourself. Are governments and NGOs prepared for that challenge? Are they taking into consideration housing, mental health services, such as rape counseling for women, family planning services, or school programs for HIV-positive children?
Care providers and institutions need long-term support too. In some countries, there are few non-governmental organizations (NGOs) or community- based groups with experience in rolling out comprehensive AIDS programs. As we saw in the US and Western Europe, the learning curve can be steep. Given the dearth of resources and funding in the poorest countries, there will be problems of mismanagement, of funds being squandered, of corruption -- all problems seen in richer countries. Given that outside donors and agencies are funding treatment programs, how prepared are they for the difficult road ahead? What about scientists, health professionals, medical schools? How prepared are they for the long-term test of controlling HIV?
The upside of all these challenges is the many opportunities they present for creating capacity, for providing resources, jobs, and solutions. HIV treatment is related to the challenge of development, of providing these resources in such a way that individuals, groups, institutions, governments and societies become self-sufficient. Here again, there is no simple blueprint. Instead, politics and economics are big factors that threaten to derail the best-laid plans of political and health leaders or communities.
Today, many developing countries also have strict laws outlawing homosexuality, prostitution, and recreational drug use. The criminalization of such behaviors makes it harder to reach out to closeted gay men, sex workers, and drug addicts who need access to testing, support, treatment and care. Changes in law and policy are thus integral to supporting the goals of global AIDS treatment.
Immigrants are another vulnerable group. On a global level, there is an important question -- a contradiction -- that is being ignored by global leaders and activists alike. In pushing for treatment, we are asking millions of people to come forward for testing, to risk disclosure. Yet almost every nation has laws that track those with HIV, and that prevent their easy passage across borders. By advocating access to treatment, are we also asking people to risk the loss of their civil rights? Little of this discussion has made its way into media coverage, but I imagine it has taken place among individuals and groups contemplating treatment. Or has it? How much information do communities have about the implications of starting HIV treatment, beyond their immediate need to survive?
Looking beyond AIDS to the greater revolution in global health-care and policy, will the gains of the access movement extend to other arenas? Will medicine for life-threatening diseases be removed from the realm of commercial profits? Will the battle over AIDS drugs and patents lead to wider use of generics globally? Will the anti-globalization battle lead to a reconsideration of proposed international forums like the World Trade Organization (WTO) and Free Trade of the Americas Agreement (FTAA), which stand to have a profound effect on our health in the future?
As I crossed the globe, all these questions and more informed my travels. Then and now, what seems most important is to ask a lot of questions, look hard at the numbers, read the plans, note what is and isn't getting included and why; to talk with people with HIV and their family members, with activists and doctors, researchers and policy makers, with health and trade officials, with drug manufacturers on both sides of the drug war -- all in an effort to gain insight into this unfolding epic challenge.
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