Our Kind of People: A Continent's Challenge, a Country's Hope (17 page)

For Doc and many other HIV/AIDS activists, the answer was that Westerners had failed to see people in Africa with HIV/AIDS as similar to ourselves and thus deserving of proper medical care. For Africans who have HIV/AIDS, the marginalization is twofold. First comes the stigma. Next is the general marginalization of the continent resulting from poverty. It is by now a truism that the global poor are castaways without access to the same resources enjoyed by those with means. Their needs are neglected, their fundamental human rights often ignored. Being African and HIV positive elicits intentional and unintentional neglect in the domestic and international spheres. The option of mass treatment was not seriously pursued, and emphasis was placed on programs to prevent those without HIV/AIDS from contracting the virus. For some activists, the greater emphasis on prevention was tantamount to writing off as lost the very large population of marginalized people who were already positive. They turned an intellectual debate among public health professionals about where to best invest limited resources—prevention versus treatment—into an urgent human rights issue. Not providing treatment to those most vulnerable and least able to afford it was portrayed as a statement by African and international leaders that HIV-positive Africans did not have a fundamental right to health. By recasting the lack of treatment in human rights terms, activists transformed the HIV/ AIDS epidemic into more than just a health issue; it became a political issue with increasingly political and economic solutions.

From Cape Town to Abuja, indeed throughout the whole continent, organizations like the Treatment Action Campaign of South Africa or Doc’s very own Physicians for Social Justice have tied together access to treatment, political activism, economics, and human rights. They continue to stress these links today. By putting political pressure on governments and social pressure on the makers of HIV/ AIDS medications, they developed a plan of action to stem the epidemic with language that emphasized the right to proper care through the provision of ARV treatment, the strengthening of health systems, and the creation of domestic and international bodies with the power to tackle the issue. The 2001 Abuja Declaration on HIV/AIDS, Tuberculosis, and Other Related Infectious Diseases, signed by African heads of state at a summit in Nigeria’s capital, is a direct result of this push to make treatment available to all. In addition to formally recognizing the severity of the HIV/AIDS epidemic, the declaration also called for increased domestic health care budgets with funds specifically allocated for HIV/AIDS prevention and treatment and the “creation of a Global AIDS Fund capitalized by the donor community to the tune of US $5-10 billion accessible to all affected countries to enhance operationalization of Action Plans, including accessing Anti-retroviral programmes in favour of the populations of Africa.” At the international level, this resulted in the creation of the Global Fund to Fight AIDS, Tuberculosis, and Malaria; increased focus on HIV/AIDS from economically oriented donor organizations, like the World Bank; and most recently and perhaps most effective in providing ARV therapy to many people throughout the continent, the creation of the U.S. President’s Emergency Plan for AIDS Relief, commonly known as PEPFAR.

At the domestic level in Nigeria, the Abuja declaration bolstered recently created governmental structures to handle the HIV/AIDS emergency. The National Agency for the Control of AIDS (NACA), established in February 2000 and headquartered in Abuja, was to handle Nigeria’s federal government response to the epidemic, while the states formed SACAs—state agencies for the control of AIDS—to coordinate the various local responses. While imperfect, the result has been an improved focus on the epidemic in Nigeria with better strategies for prevention and greatly improved access to treatment for people living with HIV/AIDS. The change is incremental, but each year the cooperation of international and domestic partners brings services to an increasing number of people.

In June 2007, I visited the Lagos State Agency for the Control of AIDS (LSACA), headquartered at the Lagos General Hospital. The hospital sits right in the center of Lagos Island, steps away from the water, separated from the marina by a traffic-choked highway. It is a tightly packed collection of old, worn buildings squeezed between a number of iconic skyscrapers housing some of Nigeria’s largest banks and industries. The LSACA office was an even smaller building, possibly an old block of servants’ quarters, that suffered between two large wings of the hospital, right next to a deafening standby generator. I met an official there who agreed to speak with me, anonymously on account of his sensitive government position.

He was in his early forties and had hints of gray, even on his closely shaved head. He spoke slowly and with the slight British accent belonging to a certain class of Nigerians. In what he called a previous life, six years earlier, he had been an obstetrician at a government hospital.

“I had this image of being able to save people’s lives and bring babies into the world, make everyone happy, deal with complicated cases. And I was doing a bit of that, but a lot of the women were coming when it was too late to help them, and you ended up bringing out almost as many dead babies as you did live ones,” he said as he leaned back in a black swivel office chair and crossed his legs. We sat in a conference room with a noisy air conditioner circulating the musty smell of old files stacked upon files against the walls. The table in front of us took up most of the space, making it hard to move around the room without bumping knees or feet against the furniture. “I wanted to do good, but I also wanted to feel good, and somehow it didn’t all come together. At one point, I was just going to quit and get into a private setting or go into something entirely different from medicine.” He chuckled softly and spread his arms toward the chaos. “I ended up here. And the first few days it was just paper around me, and I thought,
What the hell did I let myself in for?
Files, papers, I don’t know squat about that kind of stuff.

“I think we’re making quite a lot of difference,” he said. “When this first agency started, the response to HIV and AIDS had just started, so everything was new. I think we’ve managed to organize things in quite a decent way. We’re not where we want to be—I know that. We’re slowly going, but on a good path, I think.”

It had been an intense and not altogether pleasant beginning. Many people considered the agency yet another level of bureaucracy destined to siphon precious money meant for Nigerian citizens in need. They also wondered why it wasn’t doing more, and doing it faster. The agency lacked adequate funding to properly execute both prevention and treatment programs, but more recently it had gained the confidence of the general public and people living with HIV/AIDS because of increased funding from international donor agencies. The staff had put the money to work by expanding counseling and testing programs and improving access to treatment.

“Because treatment is available free, counseling and testing is available free, many people believe in us more,” he said. “The bulk of my work, my goal really, is to see that the people who are not positive remain not positive, the people who are positive and need treatment get access to treatment, and for the people who don’t need treatment, to delay the time at which they would need treatment, and then to mitigate the impact on the lives of those who are positive and their families. But not to mitigate it in a way that problems they had even before they are positive then get solved. Hell, I have problems, and they are not going to go away tomorrow. There is nothing that says a positive person’s problems should go away tomorrow.”

“What do you mean?” I asked. I was somewhat taken aback. His frankness was very uncharacteristic for a government official.

“I’m the kind of person who likes to say things as I see them. I think that positive people need to get off their butts and stop thinking that everything has to fall into place for them just because they’re positive. They need to take more responsibility for their lives. Responsibility equals asking to be treated like an equal. I don’t know if I’m getting the picture across. I can’t say to you, ‘I’m blind. I don’t want you to treat me different from you,’ but say, ‘Oh. Any time I want to cross the road, walk me across.’ And when we sit down about something, I say, ‘Why are you treating me as if I have a disability or [as] if I’m different from you?’ No. If I want to be independent, I should cross the road by myself. There are a lot of people that are not positive in this country that cannot eat three square meals. There are a lot of people that are not positive in this country that are ill and need to pay for their treatment because there is no proper health insurance scheme. There are a lot of people that are not positive and need to work very hard to achieve what they achieve.”

In the six years he had been at LSACA, he had encountered a number of HIV-positive people who had tried to take advantage of the increased funding for HIV/AIDS-related work. Others, he said, had developed a sense of entitlement that he saw as undermining the institutions set up to protect their interests and ensure equal standing in the eyes of the general public.

“They come at you with an attitude sometimes like, ‘Hey, I’m positive. You guys are here because of me.’ People want you to give them things just because they are positive; they want you to do things for them just because they are positive. They want everything to be free just because they are positive. It doesn’t work like that.” He sat up and stopped his chair from its squeaky rocking. “We are trying to tell people, ‘Don’t discriminate, don’t stigmatize positive people, because they are no different from you.’ Let’s say that positive people are like you and me, no different; let that be across the board. I’m here to see that they get access to treatment, they are not stigmatized, they are treated like human beings. I’m not really here to make sure their rent is paid, because people who don’t have HIV are having problems paying their rent. ‘I’m positive—so what?’ That’s the message we’re all trying to spread: ‘People are people, whether or not they have HIV.’”

His blunt words reflect both frustration and a deep practical commitment to restoring the fundamental equality of people living with HIV/AIDS. It avoids pity and the patronizing attitudes that sometimes affect those more distant from the realities on the ground. If people are people, then efforts against the disease and its epidemic should seek to restore their functionality as people. This is the role of medication. It allows the body to operate. It eases the burden of illness. It removes the physical signs of disease. It abates the fear of imminent death. Treatment saves lives, but a solution to this epidemic requires more.

I
didn’t know it at the time, but around the corner from the LSACA office was a large ARV treatment facility. Four years later, I found myself in front of the building, ready for a whole day of interviews with people receiving treatment. It is not an easy place to find; rather, it’s the sort of place you would need to know is there before you could locate it. Yet it is a stop for thousands of people who are receiving drugs that will prevent their HIV from turning into full-blown AIDS. The facility was in what appeared to be a large storage space with exposed steel beams and visible wooden frames supporting a corrugated tin roof. The open floor had been sectioned into consulting rooms by flimsy plywood dividers. Privacy was minimal. Patients sat on uncomfortable wooden benches, apparently bored stiff. They fanned themselves with bits of paper and open palms while waiting, and waiting, and waiting, to see a doctor, nurse, or counselor to discuss their lab results and treatment regimens.

It was here that I met Angie, a twenty-eight-year-old woman with a waiflike figure. She wore skinny jeans with heels, and her lipstick had the faintest hint of glitter. She bounced her legs nervously as we sat in metal chairs squeezed into an exam room now used for storage. It was crowded with extra file cabinets and dust-covered standing fans.

In 2005 Angie had just finished college and started work when her life changed. She tested positive for HIV. “I was supposed to get married, but I’ve missed that,” she said. “You know what it is like when you see your wedding gown, you share clothes to people, and the guy just walks out?” She let out a bitter laugh and shook her head. Her earrings made a tinkling sound as tiny metal rods knocked against each other. “I was actually working in a bank, and you know, it’s very difficult at times to say you want to go out of the office. At the office, I couldn’t really tell them I had HIV. I told them I had TB and I had to be away from work for treatment. They actually wanted to treat me in the office, but I didn’t allow them. In the office, they now found out or something, because they stopped paying me for that eight months while I was receiving my treatment.” She sighed heavily as her eyes filled with tears. She wiped the corners of her eyes with her fingertips and tried to breathe deeply to calm herself. “I’m sorry,” she said.

I put a hand on her knee and said, “Angie, it’s OK.”

When she brought her hands away from her face, her fingertips were stained with mascara.

“I’ve been taking these drugs for … how many years?” she said. “And I thought I’d outgrown it, but the anger is just starting again. Right now I don’t know how to continue. When I was working, I didn’t really have much problems with my health. It was easy for me to manage myself. I work. I eat well. I do anything I want to do. I didn’t have any complaints. But right now I have different complaints, so I now know one of the problems that makes people to die from this: you think. Thinking is the major problem—when I think of so many things I’ve lost. Because I started thinking, my CD4 count has dropped. I just have to stop. I was feeling like a strong woman before, but now I don’t know. I feel very very depressed. I feel very, very trapped. I’m in a cage right now. I’m just living life as it comes. I’m just there. I’m very lonely.”