Monday, August 30, 2010

Thoughts on a pandemic

For most Americans, HIV is something that happens to other people. It happens to skinny, uneducated Africans half way around the world, to gay men in San Francisco and people who have sex with prostitutes, or to needle-sharing heroin addicts. Most Americans don’t have friends or family members who are HIV-positive or know anyone who has died of AIDS, and very few even get tested for HIV on a regular basis. In America, HIV just isn’t something people think about every day.

But in Swaziland, as in many African countries, the impact of HIV/AIDS permeates every sector of society. Nearly every family includes someone who is HIV-positive and just about everyone has lost a parent, child, sibling, cousin, friend, classmate, or co-worker to AIDS. There’s a shortage of teachers in Swazi schools because the country’s teacher training colleges haven’t the capacity to train new teachers as quickly as the experienced ones are dying. Credit cards come with funeral benefits instead of Sky Miles.

Needless to say, doing HIV-related work in Swaziland has been a very unique learning experience for me. So what have I learned?

Mostly that HIV is scary. People who get infected with HIV usually have no idea they’re positive for 5-10 years after infection, during which time they’re still transmitting it to others. The delayed onset of symptoms also means that an HIV-positive person can be in denial of or lie about his or her HIV status for several years. But even while an infected person looks and feels healthy, the virus is busy mutating and reproducing at a ridiculous rate in his or her body, meaning that every HIV-positive person in the world has a slightly different disease and that even HIV-positive people can be re-infected with different strains of the disease. HIV is also a relatively smart virus, adapting to any pharmaceutical attempts to slow or reverse the progress of disease. Drug-resistant strains of HIV have developed to all of the anti-retroviral (ARV) medications developed since the beginning of the pandemic, and even the most scientifically advanced of anti-retroviral drugs eventually become ineffective. Based solely on biology, the virus also disproportionately infects women—an already disadvantaged population in most developing countries—and productive young adults, meaning that HIV leaves behind more orphans than diseases like malaria or polio. Most frightening to me is the fact that, after nearly 30 years of research, the world is still no closer to finding a cure or vaccine for the disease. It’s honestly more powerful than we are.

When I came to Swaziland, I naively thought that all that was needed to stop the pandemic was education. I thought people became infected because they didn’t know how the virus was spread, didn’t know how to protect themselves, or didn’t have condoms to prevent transmission. I thought that if they learned how to protect themselves, they would. But, two years later, I can safely say that lack of HIV education and the unavailability of condoms is not the problem in Swaziland.

So what IS the problem? Is it the fact that 30-year-old men and women are still considered “youth” and therefore tend to act without thinking of the consequences? Is it that most people’s outlook for the future is so bleak that they simply don’t care if they get HIV? Do Swazis have more sexual partners than Americans to spread the disease to? (For the record, this isn’t statistically true.) Are Swazis forced by poverty into tough situations like commercial sex and staying in relationships with unfaithful spouses? Are they just so confident that HIV will be cured (either by future pharmaceutical breakthroughs or by dishonest preachers promising miracles) that they don’t care if they become infected? Has the prevalence of HIV in Swaziland caused a sense of fatalism among Swazis, or made “HIV-positive” the new “normal”? Has the existence of disease-delaying ARVs or anti-stigma campaigns made people less afraid of becoming infected? Or are people simply still in “it won’t happen to me” denial?

Honestly, what I’ve seen in Swaziland is a complicated combination of all of those factors…and a thousand more I can’t even begin to understand.

So what is an appropriate response to this pandemic? How do NGOs prevent future HIV infections in countries like Swaziland? What obligation does government have to provide HIV prevention education for youth, or care for HIV-positive people? Should the focus of public health interventions be preventing new infections, improving the health of people currently living with HIV in order to minimize AIDS-related deaths, or care for orphans and others affected by the pandemic?

Obviously, an ideal approach would incorporate all of these things, and in Swaziland that’s kind of happening. ARVs donated by USAID and WHO and various pharmaceutical companies, etc., are distributed to HIV-positive people by MSF and local health workers. HIV education has been incorporated into the curriculum for schools, and flocks of volunteers (like me) and NGO workers have been sent to inundate the masses with slogans about HIV prevention. Government (theoretically) pays school fees for orphans, and community centers provide meals and preschool for OVCs.

But, as I teach in my business classes, everything has an opportunity cost: every dollar spent on ARV distribution is a dollar that isn’t spent on supporting OVCs, etc. So what is the ideal combination of responses? What is most important in the long-term fight against HIV/AIDS?

In my opinion, a response focused on ARV distribution isn’t a long-term solution to the pandemic as long as new infections keep happening. While I understand that keeping HIV-positive people alive is both necessary (for the prevention of orphaning, etc.) and, to a degree, a moral obligation, it seems rather short-sighted and wholly reactive. I understand that, initially, keeping people alive was the most immediate response to the emergency that HIV/AIDS created in the country/continent/world. But why is the number of people receiving ARV treatment still used as an indicator of the success of an HIV-focused intervention? Why is Swaziland proud that 50,000 of its citizens are on ARV treatment? Shouldn’t the country be bragging that 650,000 of its citizens are still HIV-negative?

There are some who see ARV treatment as the wrong approach altogether. They argue that:

· Low adherence to ARVs in rural communities (like mine) leads to a certain level of immunity among infected populations and to drug-resistant mutations of viral strains that otherwise would not exist, making the development of a future cure or vaccine even more complicated and perhaps even eliminating the possibility of a cure for the majority of infected people.

· HIV infection also a woman’s fertility by as much as 50%, but ARV treatment restores it. This means that a woman on ARV treatment is as much as 50% more likely to get pregnant than one not on treatment, but still 100% certain to die of AIDS. In this way, ARVs actually increase the number of future orphans born to HIV-positive women.

· ARV treatment increases the window of time for a person to transmit the virus to others from about 5 years to as long as 25 years, meaning that a person on ARVs can infect as much as 5 times as many people as someone not on ARVs.

· ARVs delay the onset of disease and AIDS, reducing and even eliminating symptoms to the point that HIV-positive people neither look nor feel sick. This makes it easier for HIV-positive people to lie about their status to partners, or makes them feel cured so they don’t take necessary precautions to protect their partners.

· With ARVs, it is easy to deny that a person is sick and, when they die, to deny that the person has died of AIDS. This makes it seem to others in the family/community like HIV/AIDS is not as big a problem as it actually is.

Honestly, all of those things are completely true. But are they really reasons not to provide ARV treatment for HIV-positive individuals? If ARVs were not available to the adults in my host family, probably ALL (instead of just half) of the kids on my homestead would be double orphans. ARVs also reduce viral load (the number of copies of the virus in the body), which actually reduces a positive person’s risk of passing the virus on to a partner compared to an HIV-positive person NOT on ARV treatment. ARVs are also instrumental in preventing the transmission of mother-to-child transmission, which is pretty important. From a social and economic standpoint, they also prolong the life of an HIV-positive person enough that they can still contribute to and support their families/communities just as an HIV-negative person would. Denying HIV-positive people access to ARV treatment would widen exponentially the scope of the virus’s impact on society. (Never mind the moral implications…)

And then there’s the issue of prevention. As far as diseases go, HIV is relatively difficult to transmit. It requires direct contact between one of four infected fluids (semen, vaginal fluid, blood, breast milk) and an uninfected person’s open skin/sore or mucous membrane. It’s not transmitted by shaking hands or coughing or any other sort of casual contact, and it’s pretty easy to avoid the kind of situations that put someone at risk for infection. And yet new infections continue…

The problem lies in the difficulty of affecting behavior change. HIV educators (like myself) can tell Swazi youth about the four fluids and the progression of HIV infection and the importance of using condoms until we’re blue in the face (and we certainly try), but all the HIV prevention education in the world means nothing unless people actually USE it. (And by “it” I mean either abstinence or condoms.) Unfortunately, in my experience in Swaziland, few people care enough about preventing HIV to say “no” or use condoms. HIV is something that people see in the abstract, possibly because it’s everywhere in Swaziland or possibly because it takes so long from infection to onset of symptoms, so they don’t take precautions to keep themselves uninfected.

The other approach to preventing new infections is the development of an HIV vaccine, which has been a discouraging but financially significant part of the fight against since 1981. While an HIV vaccine would eventually eradicate the disease (or at least, like polio, relegate it to only the poorest parts of the developing world), it’s probably still a long way off. And pharmaceutical companies have much greater incentive (and much bigger R&D budgets) to develop ARV-type drugs that HIV-positive people take twice daily for the rest of their lives than to develop a one-time vaccine. And even the best vaccine couldn’t help the 40 million people in the world who are already infected…

Then there are the millions of children orphaned by the pandemic throughout Africa and the rest of the world. As of 2007, 31% of Swazi children had lost one or both of their parents to AIDS, which is a monumental problem. These kids grow up with emotional, nutritional, and developmental problems, and often are abused and/or never attend school. Shouldn’t these blameless victims of the pandemic be the focus of the world’s response? But how to help them? Orphanages or other residential care facilities? Support for extended families raising orphans? Free education and meals at school? As necessary as OVC care really is, it’s just as reactionary as ARV treatment. Effective HIV prevention could have kept the kids’ parents from becoming infected in the first place, and ARVs could have kept them alive. It’s cyclical.

Another approach to the orphan problem is promoting better family planning among HIV-positive women. While I believe that it’s every woman’s right to have children if she so chooses, I sometimes question the prolific nature of HIV-positive women in Swaziland and wonder whether the orphan problem could be somewhat curbed in the long-term by a massive family planning educational campaign. (An interesting side effect of using condoms to prevent pregnancy is the prevention of HIV transmission…)

My HIV-positive sisi (host sister), for example, has gotten pregnant 3 times since learning her status in 1998. Two of those babies died of AIDS-related complications, one during pregnancy and one at about 1 year, and number three (Mpendulo Siyabonga) is 14 months old and confirmed HIV-negative. It’s really great that she sought counseling and did everything right and managed to have a negative baby, but my sisi is in such advanced stages of the disease that he will likely be an orphan by the age of 5. And then where will he live? Who will feed him and pay his school fees? Who will take him to the clinic when he’s sick or instill in him the values he needs to become a responsible and respectable adult? Sadly, maybe no one. (Or, at best, his 11-year-old brother.) No woman would want that hopeless a life for her child, right?

So what should be the priority? Prevention education? Development of a vaccine? More effective, cheaper, or more widely distributed ARVs? The ongoing search for a cure? Care and support of OVCs? Of all the things I’ve learned in the last two years, this is not one of them. I think I’m actually further from an answer than I was when I arrived.

All I know is that current interventions in Swaziland aren’t really working, and that the reasons for the failure are complicated. Sure, people with HIV are living longer and orphans are getting free education and whatnot, but the rate of new infections among 15 to 24-year-olds is actually increasing, which foreshadows an even more serious epidemic to come.

HIV is into its third generation of infection in Swaziland, meaning that children born today will grow up with parents and grandparents also affected by HIV. They won’t know what their families SHOULD be like without HIV infection, or how the demographic of their communities has changed because of AIDS-related deaths. The virus has become a normal part of Swazis’ lives, which is frightening to me. In my opinion, that makes it an even more difficult pandemic to fight than what gay men in the US fought 25 years ago when the disease was still largely a mystery.

Still, there’s reason to continue doing the kind of work I’ve been doing the past 2 years. Baby Mpendulo Siyabonga is negative because of HIV education and the availability of ARV drugs at the local clinic. My gogo (host grandmother) and mkhulu (grandfather) are still alive 15 years after infection because of ARVs, which allows them to take care of all their orphaned grandkids their infected children left behind. That’s something, at least.

But what about the longer term? What of a more active, less defensive response?

If I ever find the answer, I’ll be sure to let you know.

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