You were involved with the HIV/Aids epidemic at a very early stage, and, since then, have given a lot of thought to epidemics in general. Why are you so keen to use the term ‘plague’ to describe it?
At the beginning, in 1981, Aids was not called an epidemic because there were only a handful of patients that were affected. At that time, the cause was not known. As I got involved more deeply with the patients and their families, it became clear it was not just young gay men who were affected but that there were also mothers who were transmitting the virus to their babies, women who were getting infected from men, and people in need of blood transfusions who might become infected with the Aids virus.
The word ‘epidemic,’ for me, is a scientific word unattached to the many other facets of the epidemic―sociologic behaviour; the politics; discrimination; the personal impact on multiple lives.
I think it was the first disease that some of us dealt with that affected everybody in the family, and the communities that people worked and lived in, to such a great extent. It may have had a lot to do with the time at which it appeared. Communication was better than it had been a century earlier. It allowed more interaction and more description of the extent of the involvement. It was not like the early epidemics, which were confined to more specific geographic areas—this was global.
The human suffering isn’t captured in the word ‘epidemic.’ I think, from a historical point of view, ‘plague’ better describes the broad impact of Aids.
You’re also talking about the emotional impact.
Yes, because for those who were intimately involved, you were dealing with patients that you knew well. You knew their names, you knew the families, you saw the mothers and the children, you saw the ramifications of the disease. For some of us, it was not sitting in an office analysing data, saying, ‘This year we had so many more thousands of cases in men, women, and children. The epidemic is expanding.’ This was being involved, this was seeing the compassionate aspect but also the prejudicial aspect, the discrimination. It was going deeper into the humanity of the suffering. The word ‘plague’ captures that.
“The human suffering isn’t captured in the word ‘epidemic.’ I think, from a historical point of view, ‘plague’ better describes the broad impact of Aids”
Plagues have intrigued me ever since I was a child, reading about them in the Old Testament. In high school, I read books about diseases and the discovery of diseases. It never struck me that I was interested in it because of numbers but more about what it did to humanity.
The first book on your list – Albert Camus’s The Plague (1947) – seems to encapsulate all this very well. Tell me a bit about why you’ve included the book and why you think it’s so good at talking about epidemics.
It’s an amazing book, considering Camus probably never personally experienced a plague. In his novel, Camus captured everything that we were dealing with in the Aids epidemic without Aids existing at that time. Without his knowing what the consequences of the HIV plague were going to be, he seems to have gotten all the actors in there and the myriad of things that you wrestle with. For example, there’s the researcher, there’s the research subject, there’s even the opportunist who takes advantage of the terrible things happening. There’s the journalist—which reminds me of a book we’ll talk about later, And the Band Played On. Journalists were critical in calling attention to the Aids epidemic. Camus describes that in The Plague as well. Then there are the volunteers—the people who just happened to be there at the time of the plague. Instead of running away from it—as many people do—Camus goes into how a volunteer gets deeply involved in it and what they can do.
Camus seems to have understood the many other components of a plague—the fear, the discrimination, the hopefulness and the hopelessness—and he also wrestles with, ‘What is the meaning of this?’
I have read that the book could be an allegory of war, especially his dealing with what happened in France with the Nazis. That’s not quite the same as a plague that comes on you from an infectious source. Even though there’s suffering and death there, it’s psychologically and emotionally dealing with the question of human evil. Plagues are not inherently evil, although they create profound and extensive pain and suffering.
How did Camus know all of this? Did he live through a plague? Not that I or anyone else knows of. But he did live through a terrible time with war, and war is integral to the spread of disease. Somehow he managed to put all that together in this very well-written book.
You use direct quotes from The Plague to begin each section of your own book, Lethal Decisions. Can you give an example of a quote that was particularly apt?
The one that hit me first was where he writes that, “…the plague had lost its fleshy substance.” It’s such a simple phrase. At the beginning, the people we saw had names. We knew them personally and we saw them getting sicker and we saw some of them dying.
Then, as the HIV epidemic continued, we started getting into confidentiality and reporting HIV infected patients anonymously. You didn’t use the names because of the fear of discrimination. So, what was reported was that the epidemic had so many thousands of cases. In the process, people forgot the suffering of individuals. It didn’t seem real anymore. People were overwhelmed by the numbers and began talking about, for example, 500,000 plus or minus 30,000 individuals. They didn’t want to think about the real numbers. We got used to things.
That’s very true of the Aids epidemic now. I started writing my book about the time there seemed to be a mounting indifference to HIV. The report last year was that there were 1.5 million new infections in women and children, and another million in men. Then we wait for the next year’s report. We get shaken by the Ebola virus because it has caused 8,000 deaths in one year. In that same year, HIV caused a million deaths.
“In his novel, Camus captured everything that we were dealing with in the Aids epidemic without Aids existing at that time”
One of the reasons I wrote my book was because I did think the epidemic was losing its “fleshy substance.” People were forgetting—especially about the women and children in poor countries. They were being talked about in terms of how bad the epidemic had become but very little was being done to help them.
I end my book with Camus’s conclusion, where he reveals who wrote the book. He says, “the chronicle is drawing to an end and it seems to be the moment for Dr. Bernard Rieux to confess that he is the narrator”. Then he goes on to say, “he was well placed for giving a true account of all that he saw and heard” and “following the dictates of his heart, he has deliberately taken the victim’s side and tried to share with his fellow citizens the only certitudes they had in common—love, exile, and suffering. Thus he can truly say there was not one of these anxieties in which he did not share, no predicament of theirs that was not his.” I wanted to end my book that way because he captured it in his novel.
I’m deliberately taking the side of the women and children, as if they’re people that I know personally. I want to defend them. I don’t want them to lose their dignity by being diminished or becoming less valuable. They have a right to health, they have a right not to remain in poverty, they have a right to the same medicines that we have and that have changed this epidemic in wealthy countries.
At the beginning of The Plague, people couldn’t really believe it was happening. They just wanted to carry on as normal. Is that quite common in epidemics that people just aren’t prepared to have something come along and disturb their lives?
It’s absolutely characteristic. I refer to it as ‘denialism’. The most well-known denialist in the Aids epidemic is Peter Duesberg, a tenured professor at the University of California, Berkeley, who says that HIV is not the cause of Aids.
Other, more subtle, forms of denialism exist. In 1981/82, we would go to meetings, present to the Red Cross and the National Institutes of Health, submit articles to journals. People said we were exaggerating, that this was not going to be a major epidemic, that this was confined to a small group of gay men who were having multiple sexual partners.
Get the weekly Five Books newsletter
Even as we were talking about it, the epidemic was affecting hundreds of thousands of people. It certainly existed before 1981. Nobody was aware of it because there was nobody to diagnose it early on. Individuals with Aids were misdiagnosed as having advanced tuberculosis or malnutrition.
“If you look through the history of medicine, and discovery, there’s always a period of denialism where people and scientists say, ‘That’s not true!’”
People think that scientists look at the data, and then make conclusions that are evidence-based. But scientists can also be denialists. If you look through the history of medicine, and discovery, there’s always a period of denialism where people and scientists say, ‘That’s not true!’ Often they don’t change their mind until it becomes so obvious and by that time it has caused irreversible damage. In the HIV epidemic, denialism led to irreversible damage in the form of advanced disease and death.
So, yes, denialism is a serious problem.
What about the moralistic element that comes up in The Plague: the priest telling the congregation that this has been brought upon them because they’ve done wrong. That was a feature early on in the HIV/Aids crisis wasn’t it?
That was prominent early on and I don’t think it’s gone away. I still find people placing blame on those that suffer from HIV for what has happened. Part of it has to do with not understanding that we all have behaviours that can be damaging. It’s a repeat of history, just like the spread of syphilis was blamed on prostitutes and not on the clients.
I had to deal with it early in the epidemic. As Camus describes in the book, there’s a physician who is thrown into this plague and reasons, ‘I’m a doctor—I have to respond to this. I can’t and won’t make a moral judgement.’
I used to tell people that if someone came in after a terrible automobile accident and it was because they were intoxicated, I would not place blame on them. As a physician, my duty, my moral obligation, is to treat the person no matter what.
The next book you’ve chosen is The Coming Plague (1994) by Laurie Garrett. Why is this on the list?
I met Laurie during the Aids epidemic because she used to come to all the major HIV/Aids meetings. I remember her sitting and listening to the scientists debate and argue about different aspects of HIV and Aids. She comes at the issue of plagues more from a historical viewpoint, coupled with scientific discoveries that provide us with a warning that things may get worse.
She goes through the past epidemics—Lassa fever, Ebola, HIV, malaria. She then points out that there are a lot of plagues that are still around us. Not only have we not solved them but, if we look at what’s happening within those plagues, things could get worse. She talks about antibiotic resistance and changes in tuberculosis and malaria that make them more difficult to treat. Recently Garrett wrote a book about the Ebola virus epidemic, one of the coming plagues she had talked about in her earlier book.
“What if HIV mutated into a virus that was resistant to all of the drugs? That’s a possibility”
We now have more than 25 drugs to prevent and treat HIV infection and yet HIV still persists. Do we now believe that even if someone gets infected, they can be treated or even cured? There is an open discussion in the scientific community about curing HIV—even as we still see millions of new infections and deaths each year. Many believe that with widespread use, the current drugs to treat HIV infection will soon get drug resistance and the epidemic will once again take off at an accelerated rate. You have to ask, ‘Was Laurie Garrett correct when she talked about The Coming Plague?’
I think what she is saying is that we’ve gotten too complacent. Science has given us a great deal of confidence that we can solve these problems, but, even as those discoveries are made, we have to confront the fact that infectious agents mutate and that they can mutate into resistant organisms or even new organisms. There are now strains of tuberculosis that are resistant to every known treatment combination.
What if HIV mutated into a virus that was resistant to all of the drugs? That’s a possibility. What if that new virus was going to keep spreading and keep the epidemic going? Or what if HIV recombines with another more infectious virus? Garrett is like a prophet saying, ‘Okay, let’s look at these diseases that existed in the past and what could happen if the infectious disease mutated or recombined with another virus to become an entirely new agent. Wouldn’t we have a new plague threatening us?’ And, just as in the Old Testament, I don’t think people always want to hear the message of a prophet.
I partially experienced this overconfidence early in my training. I was a paediatrics resident in San Francisco, and one of the professors that I really liked—a fantastic teacher called Moses Grossman—was an infectious diseases specialist. I asked my fellow residents why they weren’t going into the field of infectious diseases. They said, ‘It’s a dying field. We’ve got vaccines and antibiotics and everything is under control.’ That was 1967.
Think about what has happened between 1967 and now. We’re dealing with new infectious diseases and a threat of bacteria that are increasingly resistant to multiple antibiotics. There are issues of antibiotic resistance that we didn’t think were possible. We have infectious diseases for which we have no vaccines.
In that book, Laurie is not only compiling the history of plagues but also talking about science and its ability to answer or not answer the new threats that we are likely to encounter.
There’s quite a lot of talk in the media now, about the resurgence of tuberculosis.
This is another example of how if you neglect one disease, another disease that’s been around a long time—and is partially contained—such as tuberculosis, can re-emerge as a major threat. When HIV isn’t diagnosed or is treated late, the immune system is deficient and tuberculosis—which is contagious not through sexual activity but through physical contact—spreads in people with HIV. Standard drugs that were used to treat tuberculosis don’t work now because you don’t have the synergy between the immune system and the drugs. You have, in many areas of the world— including the US—multiple drug-resistant tuberculosis and a type of tuberculosis, emerging now, which is resistant to all drugs.
And it’s occurring not just in patients with Aids but is being transmitted to healthcare workers through physical contact and through aerosolization. Unlike HIV, tuberculosis is much more contagious when taking care of patients.
So you’ve got this serious problem emerging, a secondary epidemic, which was totally unanticipated because of HIV and not paying attention to it. Then you have people saying they’re not going to worry about it because it’s occurring in countries where there’s a high rate of HIV infection. But there have been instances where people have travelled on an airplane and were exposed to tuberculosis by an infected passenger. Again, that’s part of Laurie’s book.
Because of scientific advances, because of technology, because of people being able to travel, we are at much greater risk of some new plague emerging or a worsening of an existing plague.
Is there anything to be done, in your view?
Yes. We can’t forget about public health. We have got to adhere to fundamental and historically sound public health principles. Most importantly, you have to respect these infectious diseases and not feel that we can control them simply by creating a new antibiotic.
The dangerous side—which I think has to be raised—as in historical times (and this has remained relevant for HIV), is that when diseases are contagious and you want to protect yourself from them you may think that the best way to do that is to ostracise the people with the infectious disease. That is the risk you run when you become adamant about controlling disease using isolation.
You don’t have to go that far. We should be intervening at early phases of infection and doing simple things because complex science usually answers the issues of diseases when they are advanced. I call that downstream. To me, upstream is prevention. With the Ebola epidemic—which is repeatedly mentioned in some of these books—one of the solutions to keeping that from spreading is teaching people early on to recognise what Ebola is and then providing inexpensive interventions such as soap and water and latex gloves. It’s that simple. That virus probably would not have spread as far as it did in a recent epidemic, had those simple public health principles been available.
There are measures that can be taken that are already available and don’t require new discovery. We see that in some of the historical examples. Some of these diseases disappeared at the time people realised that you had to have sanitation—that the diseases were coming from contaminated water. Then you forget about that, and you have a cholera epidemic in Haiti in 2010 and again in 2016—because, in spite of all the money that was put into Haiti after the earthquake, they didn’t provide basic sanitation and clean water for the people. The cholera epidemic came from the UN troops that were there to keep the peace. The real solution to preventing that from happening would have been to pay attention to basic public health principles of sanitation.
Let’s talk about your next book. This is Randy Shilts’s And The Band Played On (1987), about the early Aids epidemic.
Randy was a San Francisco Chronicle newspaper reporter and knew the gay community well. He saw the Aids epidemic evolving. He was concerned because his friends were infected and some of them were dying. He would come to my office at the university once a week and ask, ‘What’s new?’ He did that not just with me but also with Dr Volberding, a hematolgist, Dr Conant, a dermatologist, Dr Greenspan, an oral surgeon, and dozens of others who were immersed in the new epidemic.
He was writing and documenting how this epidemic was expanding and taking the lives of more and more young gay men. Randy was also wrestling with the contribution of behaviour to this epidemic. Why this epidemic? Why this population? We have to remember that when he started writing the book, the virus wasn’t known. It wasn’t discovered until 1983—and a test for it wasn’t approved until 1985, when the epidemic was in full force.
The book is not an easy read because it’s not written in a narrative form, it’s written in a journalistic form. But it’s the first book that really documented the details of the spread of the virus, primarily among young gay men. When he spoke to me, we were dealing with the other ways that HIV was transmitted—from infected mothers to their babies and through blood transfusion. He writes about that in the book but it’s not a major part of it.
“There was this incredible discrimination against gays because it was portrayed as being a gay disease. One of the early names for Aids was Gay Syndrome”
He documents the spread of the virus from very small communities of people to countrywide—and how that happened. I think he was fair in the way he wrote, although he’s been criticised by a number of people for being too personal.
Randy pointed out how opposition to the emerging epidemic came initially from denialism: ‘It’s not going to affect other people, it’s confined to a small group of gay men who are very sexually active.’ And Randy documents that, yes, that’s how it spread in the gay community. But that is not where it remained.
The people who didn’t believe ranged from politicians as high as the president of the US—Ronald Reagan never acknowledged that Aids was a problem until the end of his second term. And the NIH [the National Institutes of Health]—which prides itself on early recognition of disease and doing research on it—denied that it was serious. Journal editors didn’t want to publish some of the articles written about Aids. There was this incredible discrimination against gays because it was portrayed as being primarily a gay disease. One of the early names of the disease was Gay Syndrome.
Randy, in putting all of this together, shows how what became a global epidemic was resisted at the early phases—with dreadful consequences. He does it by putting names in the narrative. Randy does the best job—out of these five books—of really outlining opposition to a plague and where it comes from and identifying the obstacles to acknowledging that there is a new infectious disease that is going to threaten the world that we have got to take seriously. Maybe the evidence isn’t complete yet but it’s enough to act and we have to react quickly.
Your book, Lethal Decisions, is about mistakes that were made. Is it looking at this same period?
It starts where Randy ends. Randy died in 1994, just as these potent new drugs were being developed. As the epidemic Randy was documenting progressed, he got into the delays in treatment. Here in the US, the first drug that was available, AZT, could have been developed and gotten to HIV-infected individuals more quickly.
New drugs followed so that by 1996 there were some twenty drugs that could be used to treat HIV―in combination. They were potent and could halt disease progression. When the data came in on treatment with the new drugs it showed that there had been a major change in the epidemic. People who were infected were living longer, they weren’t having to go to the doctor as frequently, and they weren’t hospitalised as frequently. There was even data that people who were on treatment did not transmit the virus as easily as people who were not on treatment.
I start the book back in Randy’s time, 1981, but take it past when Randy was no longer alive and show how here, at last, were all of these discoveries which were changing the face of HIV/Aids in wealthy countries.
We had the International HIV/Aids Conference in Vancouver in 1996. There were some 8,000 HIV/Aids specialists there. People like David Ho and Luc Montagnier were saying that we have to treat everybody who is HIV-infected, regardless of their clinical condition or immunologic status. That was the consensus among the majority of the scientific community.
But some clinicians felt that the recommendation did not apply to certain populations, especially women and children in poor countries. This was really difficult to understand. I had a suspicion that they reached this conclusion because they had a true conflict of interest—that their research studies and funding depended on answering a question which had, in fact, already been answered. That’s where my Lethal Decisions comes in. How did decisions to withhold treatment and continue research to prove what had already been proven happen? What were people thinking—scientifically, ethically, public-health-wise? Did they know they were making decisions that would continue the epidemic?
I had to continue the story of the battles that Randy had pointed out, showing they didn’t go away. They just took a different form with equal or much more serious consequences because the epidemic was now not 10,000 new cases in a year, it was a million new infections in a year. It should never have happened. It was a blot on US government-funded clinical research, the integrity of clinical researchers, and a failure of public health to do what could have saved millions of lives. That’s why I wrote the book.
It could have been avoided?
Yes. Let me give you two examples. At the Vancouver meeting in 1996, HIV experts said everybody should be treated. The World Health Organisation is at the meeting and the head of it says that we’ve got to develop guidelines for treatment based on these new clinical research findings. But only in 2002 does WHO publish their first guidelines. That’s a six-year gap between what the scientific community is saying―everybody should be treated—and WHO writing their guidelines for the world.
Then you pick up the guidelines and WHO says that they don’t believe—here’s the denialism—that the evidence is strong enough to treat everybody. They recommend that only the sickest of the HIV-infected individuals be treated. i.e. with people that were infected, you should withhold treatment until they get sicker. That was unprecedented. The tables should have been immediately turned and WHO asked, ‘What evidence do you have that delaying a known, effective treatment is of any benefit?’
“WHO recommended that only the sickest of HIV-infected individuals be treated—that’s like a doctor withholding cancer treatment until cancer goes to the brain”
I couldn’t believe it. As a doctor, you use what treatment is available and what you know works. It would be unconscionable and malpractice to withhold treatment from someone and wait until they got sicker. If you had cancer and the doctor told you that we have a drug to treat your cancer but we’re going to wait until it goes to the brain or the lung before we treat it, there would be a massive outcry.
What do you think was going on?
Not everyone is going to agree, but I think there were two reasons. Normally when people say they don’t believe some information, it’s because there’s some sort of ramification for themselves.
In the case of HIV, with WHO, one reason was that they wanted to look good in the world of public health. They had been criticised repeatedly in the scientific and academic world and the media for not responding quickly enough to other epidimics. So they put spin on what they were doing. Say you need to treat everybody who is HIV infected—let’s say that’s 30 million people. Then you’ve got to treat all of them or you don’t look so good.
But if you say, ‘Well we don’t believe the data is strong enough that everybody should be treated, we think you should only treat the sickest patients.’ If you treated only 3 million and say that they are the ones who needed treatment (and not all 30 million) then you might look good in the world’s eye. Maybe they just couldn’t acknowledge that they were failing by treating only 10% of those who really needed it.
Another reason that people tell me was that WHO used an economic argument that was short-sighted and incorrect, postulating that there wasn’t enough money to treat all individuals using these expensive drugs. I don’t accept that because when the cost of the anti-retroviral drugs came down from $5,000-6,000 a year to $100 a year they didn’t change their guidelines on who should be treated. Also, the true cost of the Aids epidemic includes clinic visits and hospitalizations. Had all HIV-infected individuals been treated these costs would have plummeted. Three years ago they finally capitulated and said everybody should be treated, but never acknowledged that they were incorrect in 2002.
So, it’s an enigma. In other epidemics, is there any example where effective treatment for an infectious disease was withheld? I can’t find any documentation, including published medical literature. So, in the Aids epidemic, the decision to allow the epidemic to continue by not treating the majority of those who were infected clearly set a new precedent. Life-saving treatment was withheld from people who were infected until the disease progressed and they died.
Let’s talk about your next book, the
epidemiological history Plagues and Peoples (1976) by William McNeill. This was written before the Aids crisis, but there is a second edition (1988) which includes it.
Other than Camus, this is one of the first books I read, as I was trying to understand where HIV came from, why it was spreading and what might happen if it spread worldwide. How did people respond historically to other epidemics? In describing why epidemics happen, McNeill emphasises ecology—community, sociology, travel, climate—and how this affects the spread of different infectious agents. It seems logical that the spread of infectious agents would not only depend on their infectivity but also the environment where the infectious agent first exerts its influence. He comes to the conclusion that these epidemics happen primarily because of ecological influences.
McNeill wrote the original edition before HIV was discovered and I don’t think he modified the book a lot in the second edition, in which he talked about the HIV epidemic. When he addresses some of the influences that resulted in the spread of HIV, I don’t think he emphasises the influence of behaviour enough, although he does mention it. He looks upon HIV as originating from changes in ecology, that the virus could have been a recombination—which could be true—two viruses that recombine to finally become HIV. That’s one of the theories. In fact it is a worrisome theory because it would mean the HIV might recombine or mutate again to become an even more contagious or lethal virus.
“McNeill’s is a worrisome theory because it could mean HIV might recombine or mutate again to become an even more contagious or lethal virus”
Where the emergence and spread of HIV fits with McNeill’s theories is that it is felt that the virus originated in monkeys and spread to bush hunters in areas of Western Africa. As the bush hunters travelled and went back to their villages, they spread the new virus through sexual intercourse. They had acquired, it in all likelihood, through accidental inoculations as they used machetes to kill and skin animals. The change in ecology would be the transfer of the virus from monkeys to humans followed by the ability to move from forest village to multiple villages and eventually internationally, the virus spreading by human sexual intercourse rather than by monkeys.
His book is instructive because it goes so far back. He’s done a lot of research and it really says, in a different way, that these plagues are going to be with us because the world is changing. You’ve got globalisation—so now we have travel not by horseback or by military people in war but we’ve got airplanes where people travel and can spread new infectious agents. And we have massive populations of migrating people such as in the current refuge crises where an infections agent may be carried into a susceptible population with migration.
Then he goes into many of the issues that Laurie Garrett points out. Looking at all of this historically, what are the things that we have to worry about? The issue of drug resistance for example. WHO has recently provided a list of over 20 bacteria that are a threat to global health because we either lack appropriate antibiotics or there is antibiotic resistance. The virus that he highlights in his book is the influenza virus: the big epidemic in 1918 that killed more than 20 million people in two years. We have not seen an influenza virus epidemic that large again but we do know that each year we have to deal with how the virus mutated and whether or not the vaccine that was developed for that year will be effective or whether a new mutation will occur for which we don’t have a vaccine. McNeill also goes into what has been attempted repeatedly but has fortunately never been successful on a large-scale―the use of infectious agents for biological warfare. That is still something people are talking about and there have been attempts to use it. In his book, McNeill doesn’t mention the use of HIV as a war weapon, but it has happened. Women in rebel-held areas of Africa have been deliberately raped by HIV-infected men who know they will leave behind a virus that will eventually, without treatment, kill the woman, perhaps infect male sexual partners and also infect future infants should she become pregnant What these rebels leave behind is the equivalent of a viral landmine. It’s a form of trying to immobilise the opposition long after rebel activity has ceased. There is documentation that this was included in the Rwandan massacre in 1994.
“McNeill also goes into what has been attempted repeatedly but has so far never been successful on a large-scale―the use of infectious agents for biological warfare”
McNeill’s book is looking back at history and asking what we can learn from it. And, in my opinion, what we learn is that we’ve got to relearn what has happened before―that infectious disease epidemics may disappear but reappear in a different guise and may be as threatening today as they were 100 or even 500 years ago.
The last book on your list is Helen Epstein’s The Invisible Cure: Why We Are Losing the Fight Against Aids in Africa (2007).
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.
“There were some parts of Africa where syphilis was epidemic and the people in the community recognised it, didn’t stigmatise it, and brought it under control”
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.
How is that moral hazard?
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?
I know that through your charity, Global Strategies, you are very active in parts of Africa. What is the situation in terms of HIV/Aids in Africa or, indeed, in Europe?
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.
“In Europe and in the US there is progress. 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.
To turn that around, sickness is also be one of the reasons African countries remain poor. If you look at East Asia, forging ahead, and Africa limping along behind, it’s partly because of malaria and HIV/Aids and its impact on the workforce. When I was 18, I saw Out of Africa and was very inspired by it. I spent that year—1989—teaching at a rural school in Zimbabwe. I remember trying to educate the kids in my class about HIV/Aids but they weren’t having any of it. They treated it as if it were a joke. I was 18, I was trying my best. But, subsequently, so many of those people have died.
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.
“We’re dealing with a pervasive attitude of not viewing people in Africa as having the same value as people in more developed countries”
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.
Is there anything that we can do? To people reading this, what would you advise as an individual to help reverse that?
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.’
“What changed things in the US was activism and advocates who defended vulnerable populations and said, ‘You can’t do this; we will not let you’ ….There’s a lot that we can do”
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.
Five Books aims to keep its book recommendations and interviews up to date. If you are the interviewee and would like to update your choice of books (or even just what you say about them) please email us at firstname.lastname@example.org
Five Books interviews are expensive to produce. If you've enjoyed this interview, please support us by donating a small amount.