The Invisible Cure: Social Impacts of HIV Friday, May 9 2008

In the previous posts I discussed the book The Invisible Cure. I hoped that the book would lead to a clearer understanding of HIV/AIDS and the impacts it has had on individuals, communities, countries, etc., but there were a few things I really wanted to talk about that I missed:

1. OVCs- because I love kids, and I have worked for years in youth development…
2. The orgins of HIV- because I think it’s important to know about it..

There are so many theories out there about where HIV came from. I was never sure what to say, so when I would give presentations on the subject, I would say, “No one really knows where HIV originated.” I would leave it at that. There are scientists, public health officials, and HIV educators that don’t believe that there is a reason to know where it comes from. An angry researcher was quoted in The Invisible Cure as saying that looking for the origin of HIV is “distracting, non-productive, and confusing to the public…”

But we’ve all heard at one point that HIV came from monkeys. And lately it seems that there are more and more people who believe that the government created AIDS. (I am not one of them, but remember the Tuskegee Experiment?) All that is to say that knowing the origins of HIV is important. It’s important to prevention of future diseases, as well as to eliminate some rumors that might prevent people from believing that they can prevent HIV infection.

Epstein enlightened me on the theory of “natural transfer,” the theory that a very old primate virus similar to HIV “jumped” into human beings. This most likely happened when hunters got monkey blood in small cuts in their skin. But that means that the viruses laid low in isolated bush populations for years without causing any harm of epidemic proportions, until it mutated in the bloodstream of a visitor, colonialist or sex partner. It sounds plausible, but some people question the completeness of the theory:

Edward Hooper speculated in 1999 that a polio research accident was what set off HIV in humans in the 1950’s

Several scientists favor the idea of passaging- an event in which a simian immunodeficiency virus (SIV) is transmitted artificially, quickly, from one monkey to another over and over again, ultimately creating a deadly killer virus like HIV.

The mystery is still there, but a little clearer, thanks to Epstein. I’m still not sure if I can explain it to a group of high schoolers in HIV education. ( But I will try!!)

OVCs

OVCs stand for Orphans and Vulnerable Children. I bet you thought you knew what an orphan was, but the definition for the purposed of humanitarian aid are different. An “orphan” is a child who is 17 years old, or younger, who has lost both or one parent. The VC stands for “vulnerable children,” and they are children who are vulnerable from the death of a parent, HIV infection, illness, etc. The Invisible Cure documents some of the efforts of a woman named Elizabeth, who like many women in Africa, adopts children into her own home when she sees abuse. These women are absorbing the shocks of HIV, by rebuilding the family networks that would have enveloped the lost children. They do it pretty much on their own, with no help from NGOs or other organizations. In addition, they have to deal with the interferences of foreign organizations like PEPFAR who have set targets to evaluate projects, but add the children from projects like Elizabeth’s.

OR….

They have to deal with the huge impact of Oprah and megastars like her. With the best of intentions they establish schools, orphanages, hospitals, and other infrastructure that they think is needed because it would be useful in the states. People are grateful, but the money is spent in ways that do not benefit the multitude of people who need it. Oprah’s school for girls cost 40 million dollars, and only benefits a small number of girls, when that much money could help many more people get basic care. Epstein also brings to attention the fact that “at least 60% of foreign aid money never leaves the U.S.,” but it’s spent on travel, equipment, American cars or computers. This can result in unsustainable projects and can cause jealousies in communities, which isolates children even more from the love and support they need to live healthy lives. I am hoping that with the knowledge I have gleaned from graduate school, and my experiences working with children, that I will be able to find a way to get them the help they need…

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The Invisible Cure Part 2 Friday, May 9 2008

The second section of The Invisible Cure tells the story of South Africa and the fight against HIV there. South Africa is very distinct in the epidemic because of their president’s unique views on HIV/AIDS. Thabo Mbeki, has alienated many in the HIV/AIDS community by aligning himself with AIDS dissidents.

Thabo Mbeki was the heir apparent of post apartheid South Africa, the golden child after Mandela, who is often seen as a saint. But now, many people see him as a detriment to his people. His views on HIV/AIDS are very controversial.I told my boyfriend, who happens to be Ghanaian, that I was writing about Thabo Mbeki in my blog. he said defensively, “Why?! I hope you haven’t misunderstood him.”

What is there to misunderstand! I yelped. Thabo Mbeki exacerbated the HIV/AIDS crisis in South Africa by claiming that HIV did not cause AIDS, and in 1999 began what I see as an illicit rapport with a group of scientists called “AIDS dissidents.” AIDS dissidents believe that AIDS is caused by vitamin deficiencies, poverty, even pollution, but not Sex. Most people, scientists included, do not find their theories convincing. Thabo Mbeki is the only head of state to have taken the claims seriously. Epstein calls this a public health disaster, and I have to agree. Mbeki’s interest in these alternative views has obstructed the public health community from being able to prevent HIV, and this resulted in the unnecessary deaths of many South Africans. By claiming that HIV is not the cause of AIDS, Mbeki has taken the right to prevent the disease out of the hands of the people. In my opinion, that is not only unethical and reprehensible, but also a little crazy in the face of all the HIV/AIDS research claiming that unprotected sex can transmit HIV.

My Ghanaian friend defended Mbeki, saying that the freedom fighter in Mbeki leads him to combat poverty first in any debate. He sees economic freedom as the best way to address problems because he is a Marxist. Besides that, he added, AIDS prevalence is lower for those who are economically stable. HIV is a virus that lowers your immune system response, and Mbeki is just saying that there is not enough information to determine whether what we call AIDS defining illnesses are brought on by AIDS. They could be caused by something else.

He says this very calmly, and I am speechless for a second. I am trying to balance my indignation and graduate school self-righteousness with respect for his ideas and where he is coming from. Then, I remembered Epstein’s revelation that Mbeki and his minister of health practically had a war on antiretroviral drugs in South Africa. Antiretroviral like AZT drugs save lives. In fact, AZT is the reason why HIV positive mothers have a 98% chance of giving birth to an HIV-negative baby. The cost of preventing HIV in the womb is cheaper than out, but the public funds to buy the generic brands were canceled. Eventually Mbeki would tell parliament that the drugs made people sick, something he had learned from AIDS dissidents.

Well, desperate times call for desperate measures, and the desperation of HIV-positive people in South Africa led many to participate in at least one disastrous clinical trial in which 5 out of 500 people died at Kalafong hospital. Epstein never finds the answers to what happened there, and ends the chapter on a sickening note: Right before the 2004 election, the Ministry of Health started to offer antiretroviral drugs to all AIDS infected South Africans.

Yes, I was sickened when I read that. It seems sometimes that power rests in the hands of the corrupt and the disillusioned who revel in the power at the expense of ordinary folks. But the policy change was brought on not only by an upcoming election, but an organization not afraid to stand up to those in charge. The Treatment Action Coalition demonstrated that mobilization can be a formidable power when they organized and successfully sued the government of South Africa over its refusal to give antiretroviral drugs in maternity clinics. These kinds of successes are pertinent to me as a future program designer and manager because it shows that leadership doesn’t always have to come from the top down. There are effective ways to implement policies that are helpful and not harmful, and the best ones involve facilitating approaches from groups (like TAC) that are already doing positive work.

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The Invisible Cure Part 3 Friday, May 9 2008

Humanitarians across the world are trying their best to solve the HIV puzzle, but their methods have not had success. Humanitarian aid is failing! Epstein uses an anecdote about the “disappearance” of 54 MILLION dollars to make it clear:

Foreign Aid Is An ATM

The Global Fund gave the money to the country of Uganda as part of an HIV “package” that included HIV treatment, condoms, and counseling and testing. However, an auditing firm determined that no one knew where the money was! Similar scandals erupted in Kenya and Nigeria. In Zambia, a permanent secretary of health diverted funds to buy a “cure” for HIV from a businessman in Bulgaria. As a result of widespread corruption, not only have vast amounts of money been squandered, but a sense of good will has been demeaned. Epstein implies that the repercussions are dire for the image of Africans in general, but more importantly, that when the money is there, it isn’t achieving its goals. She writes,

As AIDS spending skyrocketed between 2000 and 2005, the HIV rate did not decline at all…

WHY isn’t the money helping? It’s true that HIV/AIDS funding is needed, and the package isn’t a bad idea! In the book, a young man thanks Epstein when he finds out she’s American because he is taking antiretroviral drugs paid for by PEPFAR. In other words, treatment for those infected is expensive and greatly appreciated. But something is going wrong. Many of the Ugandans worry that the HIV/AIDS money has helped to encourage what they call a “Pajero” culture, referencing the many big white SUVs that have appeared along with the NGOs. This culture represents how HIV/AIDS has become an industry for those in need of careers instead of a horrible disease. This is very clear to me as a student in the school of public health. Many of the students are focused on how they can help build capacity of local networks in Africa to stop the spread of HIV, and some are looking for paid travel experiences that are legitimized as humanitarian work.

However, Epstein believes that the disturbing trend of corruption in Africa is due to “many factors,” and neither the aid industry nor Africans should be blamed. She suggests that people have “grown indifferent” to the spread of AIDS, and that the money has created a “crisis of modernity” in which Africans struggle to transition to a modern bureaucratic state. Though they are transitioning, they still participate in the tribal kinship links that have always comprised their community networks. The kinship networks allow people to rely on each other, and oblige those who have money to help those without. When aid organizations like the Global Fund give money to officials in charge of HIV organizations, they may be contributing to the bureaucratization of the epidemic, thereby losing the human side of the disease. The campaigns that have decreased the incidence and prevalence of HIV were campaigns that counted on a lot of solidarity, support and empathy. The loss of humanity combined with those extensive kinship networks may have encouraged politicians, leaders, programmers, and ministers to use the funds for themselves and their personal friends. I think William Easterly says it best when he writes in White Man’s Burden that the programs create “perverse incentives” that “electrify the power grid” of those kinship links.

It is hard not to place blame on someone, though. I would rather like to blame poorly designed foreign aid programs and the officials that have not found a way to help their families by using their own money. Some believe that the answer lies in seeing the poorest people in the world as marketable; they believe in the private sector as a development actor. The private sector’s role would include encouraging entrepreneurship which would allow people to take care of themselves instead of relying on aid. I think this is a good idea for development, (micro credit is not a panacea,)but it hasn’t done much good yet. Yes, it’s empowering for people to control their means of production. Yes, women are better off when they don’t have to engage in risky behaviors to “keep a man” who will support them. But what I believe is truly needed is an approach that builds on positive networks already established that people trust. There should be participation on the part of the host country nationals at all stages of any program that is started: needs assessments, implementation, monitoring, and evaluation. Most importantly, any approach in the fight against AIDS needs to be something that the people themselves can relate to, (such as ABC in Uganda,) with options for reduction of risk all types of behaviors. People need to see, hear, and feel the message from the government, television, their doctor, the private sector, the state, and NGOs. This is not a battle that can be fought by the ATM alone.

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Helen Epstein and The Invisible Cure Part 1 Friday, May 9 2008

Current tome: The Invisible Cure: Africa, The West, and the Fight Against AIDS

When I read the title of this book three questions popped into my mind.

1. Cure? Why haven’t we come up with a cure or a vaccine for AIDS?

2. Has anyone come up with the “real” explanation for the origin of AIDS?

3. Why is HIV/AIDS spreading so quickly in Africa?

Helen Epstein

And with those questions in mind I started my journey with the woman pictured. She took me from a sunny day on the New Orleans Streetcar to the forefront of a worldwide epidemic that is destroying so many lives. I hope the next few entries will teach you why you should care about what Helen Epstein and her book. Also, I hope these next few entries will help us all understand the social implications of the epidemic through the lens of this book.

Epstein, a molecular biologist, came to Uganda in the early nineties to perform an experiment involving the study of thousands of blood samples from an AIDS related project called CHIPS. She had been lured away from her research on the sexual organs of an insect by the vaccine research of a scientist named Katherine Steimer. Apparently the potential of the research moved Epstein so much that she lost her passion for insect research. She decided to join the search for the cure.

In the beginning, (let’s say 1983,) people thought it would be really easy to find a cure. We live in the age of eradication. Mass vaccination campaigns have made large strides in eliminating major scourges like smallpox, so why should HIV be any different? The difference lies in mutation. A person’s antibodies will kill most of the virus, but the rest of them will mutate and invade more cells that the overwhelm the body’s immune response. Lowered immune response exposes the body to more diseases that a healthy person would easily overcome.

The world has been fighting the AIDS epidemic for 25 years now, and the impacts have been devastating. Economically, HIV/AIDS devastates the most viable parts of communities. The fastest growing group with HIV is that of people aged 25-40. This demographic represents the workforce which HIV/AIDS rapidly erodes, leaving the oldest and the youngest to fend for themselves. Socially, AIDS destroys the family structure by killing parents, and infecting children. The burden of care is put on the extended family, straining the networks that have enabled care in the past. The impacts are cyclical, involving feedback loops and shocks that can be felt for generations. For 25 years we have watched the epidemic decimate individuals, their families, and communities. The disease at times seems like a great mystery, but it is, in fact totally preventable. In Uganda, Epstein is impressed by how well informed people seem to be about HIV. They know all about the disease, yet while Epstein is there, 18% of adults are infected with HIV. In 1993, this was the “highest national HIV rate ever recorded.”

The West has assumed for years that the speed of the epidemic in Africa was due to their being oversexed. (Those ideas still exist today in our society.) Epstein postulates that this negative and racist idea is probably what has impeded the West from making any positive strides in stopping the epidemic in Africa. Western science just plain missed the boat by being unable to identify the real reason why HIV/AIDS has continued to spread so quickly. Epstein’s answer to this conundrum is concurrency. Although this theory is in the beginning of the book For me, this is the “something new” that I was expecting to learn in grad school. So let me explain it to you before I hyperventilate.

The book uses illustrations like these to demonstrate the rate of the spread of HIV. The pictures I am using here are meant to represent concurrent relationships. Epstein’s thesis is that it is not promiscuity that leads to more prevalence of HIV, but the concurrent nature of relationships. While most Westerners practice serial monogamy, about 40% of men and 30% of women in Uganda stated that their relationships “overlapped for several months or years.” This makes a difference because of the existence of what she calls a “viremic window”. This “window” is a period in which HIV-positive people are extremely infectious. The amount of HIV present in the body, (or viral load,) is very high early in infection. Epstein presents this scenario:

“If a man with two long term partners contracts HIV- perhaps from a fling from a prostitute- he will very likely pass the virus on to both of his partners in a very short time. If any of his partners has another partner, these “partners of his partners” will very soon become infected too, along with any other partners they might have and so on.”

This creates a “superhighway” that HIV travels through, spreading it faster than what would occur if people were with one partner at a time. In a society that practiced serial monogamy, the virus would have less of a chance spread as quickly, because viral load will have decreased by the time a new relationship has started.

The theory of concurrency had a serious impact on me personally because I was so tired of hearing the same stereotypes of Africans and African Americans used to explain why HIV infection rates are so high. In the “Invisible Cure,” concurrency purports itself as the panacea to cure the false image of promiscuity given to Africans. That false image led to health officials’ belief in a high risk/low risk model of sexual behavior. This is the idea that “high risk” people’s behavior, (prostitutes, drug users, etc.) mixing with low risk people led to the rapid spread of HIV. Concurrency allows people to see that all people are affected by HIV and allows all people to learn and protect themselves instead of promoting the idea that only certain people can get HIV. When HIV programs are targeted only towards “high risk” populations, not only does everyone miss their chance to fight the disease, but stigma is slapped on all those who are infected. The people become the enemy instead of the disease.

In my opinion, concurrency has made a good argument to why this epidemic has been so indefatigable in Africa, but it is not the only answer. I think there is a lot to be said for the way poverty interacts to exacerbate the spread of HIV. Unfortunately, I have not found a lot of research on the subject except for Eileen Stillwaggon’s Ecology of Poverty, which I have not yet had the occasion to read. Part 2 will explore a specific example of how some of the power constructs in South Africa have had a detrimental effect on people suffering from HIV/AIDS…

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