Thursday, April 8, 2010

The Biggest 'Omission' in Medical History?

Sometimes you come across a theory that can explain so much that you wonder why you have been flailing around hopelessly for so long. One time I was looking around one of those electronics shops that you find in every terminal in London's airports. I was marvelling at the things that can be made and even purchased at fairly reasonable prices. Because I was studying development at the time, I was trying to think why the sort of ingenuity that that goes into these products, which were hardly vital to humanity, didn't go into development. The proto-theory I came up with was that some people just don't matter.

I was horrified that this thought could go through my mind just then, because it is a value judgement, not a scientifically testable theory. Surely it has no place in development theory, especially in the specific area of HIV research, a field peopled by some of the most brilliant scientific minds alive? But the thought never left my mind because it seemed to explain so many things. How else could you explain the way people in rich countries treat people in poor countries? The more I studied, the more I realised that some people believe that (or behave as if) other people don't matter, either because they are far away, they are foreign, they are poor, they are sick and needy or are just not worth considering.

While studying HIV, I was unconvinced that the entire explanation for the rate of HIV transmission, in some countries only, could be explained purely by differences in sexual behaviour. I was equally unconvinced that so called HIV prevention programmes could possibly have any influence on sexual behaviour. And when countries boasted about how successful they were in reducing HIV transmission as a result of these prevention programmes, I thought they were unclear about why HIV prevalence had dropped and didn't really care why, they just used the circumstance for publicity.

I had to limit my study to make it manageable and did so by concentrating on heterosexual transmission of the virus, since it is the received view that this is the main mode of transmission in countries with a generalised epidemic, such as Kenya. And it turns out that that is one highly dangerous received view, for many reasons. Heterosexual transmission of HIV is definitely one mode of transmission, but the extent to which it drives generalised epidemics is completely unclear, and it always has been.

So my objection to the main players in the HIV industry is this: why has so much money and effort gone into programmes that assume the precedence of heterosexual transmission when this is just an assumption? The whole idea that there are some people who have more sex than others, or more sexual partners, or who are more likely to engage in unsafe sex, is a value judgement. But it is the value judgement that has launched a thousand careers for politicians, religious leaders, social and religious leaders, professionals of all kinds and who knows what else. It is a value judgement that drives global HIV prevention policy and spending.

There are many warning signs that heterosexual transmission of HIV does not explain extremely high rates of transmission in some countries. No credible correlation has ever been found between rates of transmission and levels of the kind of sexual behaviour that would be required to drive the sort of epidemics found in Kenya, South Africa, Lesotho, Swaziland and anywhere else. There are so many contradictions and non-correlations that many professionals in the HIV industry must have been asleep since some time in the 1980s, because there were obvious problems with the sexual behaviour paradigm even then.

Even back in the 1980s, not long after HIV was identified as the virus that caused AIDS, medical transmission was recognised as one of the possible modes of transmission. Small amounts of research went into establishing the extent of unsafe medical practices and the results suggested that these practices could transmit HIV to many people. But little further research was carried out. WHO, various UN agencies, leaders of all descriptions, professionals of all descriptions, various globally represented organisations, institutions, universities and others flew the flag for heterosexual transmission of HIV in developing countries (though not in developed countries). There were few exceptions and they were considered to be denialists or trouble makers. There are still few exceptions and they are still considered to be denialists or trouble makers.

Well, maybe medical transmission of HIV is not very high, maybe it is lower than heterosexual transmission. Maybe all the fuss is about nothing and maybe I'm just one more person poking his nose in where it doesn't belong. But that is the point: I want to know why medical transmission of HIV has not been properly investigated, why it is still dismissed as being almost non-existent. The recently published (though based on out of date data) Modes of Transmission Survey for Kenya suggests that medical transmission accounts for 0.6% of all transmission, based on an assumption that seems to have been pulled out of thin air. They also note a finding that puts the rate at 2%, over three times higher. But this is still dwarfed by most of the other modes of transmission, especially heterosexual transmission.

But those who are still being branded as mavericks for questioning the received view point to many bodies of data that have managed to investigate medical transmission rates of HIV. Those bodies of data show that medical transmission is very significant, perhaps even more significant than any other mode of transmission, including heterosexual transmission. All they are asking is that these results be taken seriously and subjected to rigorous testing. If medical transmission of HIV even stands at 5%, this would still account for millions of people currently living with HIV and hundreds of thousands of people who have died of HIV.

One of the most heartrending things about people dying of HIV, as opposed to other diseases, is that they are, because of the unexamined and long held value judgements of so many 'brilliant minds', vilified, ridiculed, shunned, persecuted, sneered at and humiliated just when they are in most need of sympathy, love and basic humanity. If it is even remotely possible that we as people are guilty of such terrible injustice to fellow human beings, surely that is in urgent need of investigation? Far from dying because they have engaged in what may or may not be risky sexual activity, people may be dying because they have followed the advice of well educated professionals.

It's almost unthinkable that much, or even any, recent cases of HIV have been transmitted by the very professionals that are supposed to be preventing and treating HIV. But it is even more unthinkable that we could suspect such a thing is happening and do nothing about it. Maybe there is a danger that people will stop going to health professionals and stop seeking medical treatment, even vital vaccinations and life saving treatment, because of a complete lack of confidence in the profession. But that is something the profession will have to deal with because they certainly don't deserve any confidence or respect until they have fulfilled obligations that have so long been outstanding. In fact, in some countries, going to the doctor may curently be a health hazard, carrying risks of infection with HIV and many other blood borne diseases.

In the field of HIV, nothing is more important right now than establishing the extent of HIV transmission through medical treatment.



annie said...

In the early '90s I was in grad school for anthropology and took a class about photography in which we had to analyze a body of pictures. I chose to look at the photographs accompanying coverage of AIDS in Africa in the New York Times. There was an incredible preponderance of pictures depicting large families, families with multiple wives, and highways (which stood for truckdrivers visiting prostitutes). My conclusion in what I wrote was that there was a lot invested in the sexualization of HIV transmission based on racist and neo-colonial notions of "sexuality."

Reading this blog, I can totally see how from the outset there have been incredible assumptions-- blinders-- that could have slanted the direction of research in general.

Simon said...

Thanks for your comment, Annie. Yes, the sexual aspect of HIV has long derailed the possibility of its control by scientific means. It has been suggested that pinning responsibility on individual sexual behaviour exonerates health professionals and public servants from any responsibility. But even so, I don't understand why the likes of WHO and UNAIDS don't demand that medical practices are properly investigated. I've only been in a few hospitals here but conditions are appalling. What would be surprising if there no medical transmissions of HIV and numerous other diseases. Funding for health has been low and dropping for several decades, how can there not be significant amounts of medical transmission of HIV?