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

"I found this book fascinating because, in her book, she addresses part of what I address in my book but she is coming at it from a slightly different perspective. She was a PhD scientist who was working in Africa on the Aids epidemic and now has turned to journalism to describe what her experience has been and what she thinks some of the solutions are. She’s using two talents which is, I think, fantastic because a lot of scientists are not very good at writing for the public. Interestingly, her observations, in spite of having a scientific background, come not so much from a ‘bio-scientific’ view—that all of the answers are in more research and more science. She turns that around and says that there are some existing ways of combating this epidemic without resorting to advanced science. When she says “invisible cure,” what she means is that some of these communities affected by HIV have their own ways of dealing with problems and are prevented from doing so—in what are possibly very effective ways—because of what I would call ‘academic colonialism.’ She expands on the idea that, ‘We in the developed country have the answers to the problems of a poor country and if you just follow what we say then that would be the end of your problems.’ Helen Epstein gives some specific examples. She points out, in the book, that there were some parts of Africa where syphilis was epidemic and the people in the community recognised it. They didn’t stigmatise it and they brought it under control. She also points out the success of the Uganda ABC programme. This campaign was generated by Ugandans and stood for: A—abstinence, B—be careful (meaning fewer sexual partners) and C—condoms. The data shows that there was a significant decline in new HIV infections. Now, there’s debate as to whether or not that’s still effective. But, initially, it seemed to work and was generated not by the ‘academic colonialist’ but by the people themselves. In her book, she tries to shake up the establishment, saying, ‘You have got to think more about what you’re doing because some of the interventions that you think are appropriate may actually be completely wrong.’ One example she uses is that of stigma. She feels that stigma was introduced by western countries’ academic communities. We had so much discrimination here in the US that we felt it must exist in poor countries. So you’ve got to have confidentiality, you’ve got to have separate clinics, conduct individual counselling in privacy which was really not possible in countries with a paucity of infrastructure. The message was that HIV/Aids is so confidential that nobody should talk about having it. Yet in order to educate people about HIV-Aids you have to know what it does and how it spreads. What that did was remove community support from people that had the disease. It indicated there must be something wrong with people who have this disease because that is what we’re taught by these westerners—we can’t identify people who have Aids or talk about them so they must have done something really bad. Her book is provocative. It’s her way of saying we have to be careful in our interventions. We go into poor countries thinking that we’re correct and that we can’t do anything wrong because we know best. We have to think more carefully about our interventions because they may not be effective in a different culture or they may send the wrong message or they may actually create harm. The term that I’ve started using recently is ‘moral hazard’. International oganizations went into Africa with research dollars and set up research studies. The benefits the researchers brought back to the US was in the form of new drugs that can be used by people who are wealthy or who have health insurance. The researchers get their own benefits from the research study conducted in the form of salaries, retirement and health care benefits but almost always, the poor people in Africa get nothing for participating in research. They can’t even get the drug, if the drug works. The researchers get all the benefits while the research participants get nothing. Let’s say there is a highly paid researcher who gets a hundred million dollars to do a research study. It involves thousands of research subjects. He states that he does not believe the data from other studies or standard of care guidelines that individuals with HIV should be treated immediately. So he sets up a research study of withholding treatment from half the individuals and starts the other half on immediate treatment. The study continues until the number of individuals in the delayed treatment group who die reaches a statistically significant level. After 100 patients die in the delayed treatment group and only 20 in the immediate treatment group, the researcher acknowledges that his original hypothesis was wrong. The researcher suffers no repercussion. In fact, his funding for salaries and benefits continues for himself, his staff, the laboratory, and data mangers. He publishes his results in a prestigious journal and even though the research studies showed that there is no benefit in delaying treatment his academic standing and possibility of promotion increases. He continues to receive grants and conduct more studies. The families of the research subjects who died receive no benefits or compensation. The individuals who survived don’t even get put on standard of care drugs. The researcher has assumed no risk but receives great benefits. Whether he is successful or not in the study, his career is unaffected and may even be enhanced. The research subjects participate in the research believing that they would receive some benefit. if they were in the delayed treatment group, they undertook all the risk and received no benefit for themselves or their families. They may have even lost their lives. It would seem to me that moral hazard should be a consideration in conducting a clinical research study and the consequences of failure weighed. The purpose would be to put greater accountability, when conducting a study, on the researchers and shift greater benefit to the research participants. Perhaps an even more poignant example is that of the WHO 2002 guidelines for treatment for resource poor countries. As I mentioned earlier, WHO stated that there was no evidence that treating all HIV-infected individuals was of benefit and so they recommended withholding treatment from HIV-infected individuals until the infection advanced and the immune system deteriorated. In many instances waiting this long to start treatment resulted in the death of the individual from advanced Aids. But it was WHO that lacked evidence that withholding treatment was of any benefit. Indeed why were hundreds of millions of dollars spent on doing research to discover how to treat HIV only to recommend that it be withheld by an international organization that was not directly involved in treatment and care of HIV-infected patients? In Europe and in the US there is progress. New HIV infections have decreased by 50% or more and most of those who are infected get treatment with combination antiretroviral drugs. Individuals who are HIV-infected are living indefinitely. The number of newly infected infants born to HIV-infected mothers in the US has decreased from approximately 2,000 each year to less than 100. In cities like San Francisco, once a centre for HIV, there have been no babies born with HIV for five years. But if you look at Africa, especially sub-Saharan Africa, there is still not the progress that should have occurred considering that we have had potent drugs to treat and prevent HIV infection since 1996. We are still observing more than 1.5 million new infections and deaths each year. And these are the countries where much of the research was done on the benefits of the drugs for treatment and prevention of HIV. I was terribly taken back by an article that I read, that was published this year in one of the medical journals. It was a study conducted in South Africa which is one of the countries that receives the most research money for HIV/Aids and has some of the best medical infrastructure in Africa. The investigators evaluated 1,700 newly diagnosed HIV-infected individuals and looked at what had happened to these individuals a year after diagnosis. I’m reading the article and I look at the CD4 count, which is a measure of the immune system. And the immune system of the people who were evaluated was around 200. That is unbelievably deficient. It’s so late in the disease that there is a real question of whether the deterioration is reversible even when the best of treatment is used. We’re talking about CD4 counts that were seen two decade ago. The investigators reported that one year after diagnosis 13% of the individuals had died from Aids. We have to ask why, when potent antiretroviral drugs were available for treatment, people are still dying of Aids. It’s difficult to understand. They have the drugs in South Africa, why are they getting them so late? I had to come to a very, very uncomfortable conclusion. Who benefits from health research? Who, in an epidemic, fares the best? Who does not fare well? You go through Randy’s book or Camus’s and it’s the poor people who suffer the most. They’re infected and can’t get the treatment because of their inferior social, political, and economic circumstances. They can’t get the life-saving treatment they need. I went to Zimbabwe last year, I took my daughter and grandson. It was fascinating and has a lot of the components that we’ve talked about. Despite how bad the economy is, the health sector in Zimbabwe is highly educated and very forward-thinking. They are able to get a lot of resources together, given the political status of the country. However, Zimbabwe was one of the countries that adopted the faulty and incorrect WHO 2002 guidelines that stated antiretroviral should be withheld from HIV-infected individuals until they got to advanced stages of the disease. For more than a decade WHO and the US conducted workshops that taught healthcare workers that treatment should be withheld until the CD4 count reaches a level that indicated severe immunodeficiency. That is absolutely wrong, but it was the WHO and US funding that had the power and the money. WHO only reversed their position in 2013, 11 years after their first guidelines and 17 years after Aids experts declared that all HIV-infected individuals should be treated. Because of all the aid for healthcare going into Zimbabwe, we went into some of the clinics. Surprisingly, we saw the shelves full of drugs to treat HIV-infected pregnant women, men and children. It wasn’t a matter of not having the drugs. The drugs were right there ready to use. But people weren’t being treated because they were still using the old WHO guidelines that required a CD4 count. They had been trained to do the CD4 counts but the new guidelines said they were no longer necessary. There was no one that told them that they could treat everybody who was HIV-infected regardless of the CD4 count. The WHO goes in and spends money and has workshops and teaches them to do something that is not clinically correct. It turns out to be all wrong. But then nobody goes back and says, ‘No no no, that was all wrong, let’s change the posters, let’s change the guidelines, let’s get rid of the CD4 machine.’ There was one clinic that I remember which had a CD4 machine—these machines cost $150,000. From the beginning of the epidemic, a small group of us said that you don’t need to do a CD4 count. Only starting treatment at a certain CD4 level ends up denying treatment to those who need it. When you have a bacterial infection, you go to the doctor and he puts you on antibiotics, you don’t wait for a laboratory test to tell you how bad the infection is before you treat. This goes back to some of Epstein’s comments in her book, The Invisible Cure where she suggests that “Western” influences on the HIV epidemic may have been well-meaning but were misguided and in the long run may have created more harm than benefit. There is also quite a bit complacency in the West, that the problem of HIV/Aids has nearly been solved i.e. it’s no longer a risk to them, personally. Perhaps we have the same attitude towards poor and marginalized individuals in our own countries, but I believe we’re dealing with a pervasive attitude of not viewing people in Africa as having the same value as people in more developed countries. This is especially true for disadvantaged women and children who are being exploited for research that benefits the researchers and HIV-infected individuals in the US but are denied treatment for themselves after the research studies are completed. During the early years of the HIV epidemic Aids activists demonstrated at the FDA, at NIH meetings, and at pharmaceutical companies. They demanded that they receive the drugs that were being evaluated in research studies. In poor countries, we don’t have the activists because HIV-infected people are not politically connected and are disenfranchised. At an academic and public health level, we don’t make the same effort to end the epidemic in poor countries as we did in this country. We don’t have the demonstrations in the streets, we’ve lost the activism. President Kennedy said (paraphrasing) that, ‘We have the ability, we have the science, what we lack is the will.’ He was talking about hunger but it can be applied to the Aids epidemic. We have the science to do it, we have the drugs to do it, we know how to prevent it, and we know how to treat it. Why is it continuing in these poor countries at a rate of more than 1.5 million new infections and deaths each year? These books address all these issues that people don’t like to talk about or fail to acknowledge. There is denialism―the epidemic won’t be as bad as predicted; the infection affects other people not us; I demand treatment for myself but am indifferent to treatment for others. And there is discrimination—not just because of the disease but because of who has the disease. At this time, 50% of those infected with HIV are women and children. When the epidemic was first recognized women and children were less than 5% of those affected. The shift occurred because poor women and children have great difficulty in accessing prevention and treatment and women have difficulty in protecting themselves against unwanted sex even if the individual is HIV-infected. What is not acknowledged in the epidemic today is that these differences are because women are not viewed with equal dignity and value. We know the answers and we actually know what needs to be done. The problem is getting access to the decision-makers. If you read Randy’s book, And The Band Played On , you see how frustrated he was with the same things—the bureaucracies, the indecision, the indifference and the unending delays. But what changed that in the US was activism and advocates who defended vulnerable populations and said, ‘You can’t do this; we will not let you.’ They confronted the government, public health institutions, the pharmaceutical companies, the government-supported researchers, and said,‘We demand accountability.’ Effective activism and advocacy is much more difficult to do in these poor countries so they need others to step into that role―and that means us. There’s a lot that we can do. We can say, for example, that we are not going to provide anyone with research dollars unless they do a better job of diagnosing and treating people who are HIV-infected and provide the medicines that work to them when the research studies are completed. People in poor countries who participate in research should also receive more benefits as a result of their participation—like some form of healthcare through a simple and inexpensive insurance. If the researchers get healthcare benefits that are paid for by the research grants because they’re conducting research then why shouldn’t the research participants also receive the same benefit? We can demand that. I’m a strong believer in activism. I think one of the reasons that situations of injustice and inequity exist is that we can easily ignore poor people. Increasingly we participate in a form of voyeurism. We watch documentaries and read about atrocities, inhumanity, violence, and starvation but we can too easily walk away from those images and do nothing to change what is happening. It’s also about increasing the economic and educational status of women and children and teaching them — especially women—how to protect themselves, how to demand health, how to achieve equity and perhaps, in that process, help them to become their own activists. I think those in political power underestimate the impact of suffering on the poor and politically marginalized until it reaches a crescendo of indifference and abuse. That’s what we’re seeing now in the US and elsewhere, as individuals rebel against political solutions that don’t benefit them. They are asking the questions, and it’s mostly women and minorities who are saying, ‘You can’t ignore us—we are equally important.’ When you get complacent or when you ignore the voices of those who are suffering, bad things happen. I think, from a compassionate humanity point of view, there’s a morality issue. You just can’t turn away from these injustices. You can’t forget about them because these are things that people suffer every day. I just can’t understand why there isn’t more concern about 1.5 million people becoming infected and dying from an infectious disease that is completely preventable and treatable. That question has got to be put very bluntly to the people who can make a difference."