Friday, October 19, 2012

HIV Interventions: When All Else Fails, Blame the Beneficiaries

I think it was around six years ago that I started to look for something to concentrate on for my Master's degree and I considered choosing something other than HIV. It would have been better if I had done so, because to disagree with mainstream views of HIV is to ensure that you are unlikely to work in the field. But I was distracted by a paper by Eileen Stillwaggon on the roles of co-factors in HIV transmission, such as intestinal parasites, malaria, malnutrition and the like. This was one of the best argued papers I had come across on why we should not view HIV as being entirely a matter of sexual behavior.

Such papers still come out every now and again, and it cheers me to think that one day, people (and by 'people', I mean Africans) may not be blamed for getting infected with HIV through their own stupidity, and as a result of their promiscuity. Epidemiologists may conclude from what they already know, that no disease is entirely independent of lots of other diseases, that HIV may actually be like other diseases in that respect. They may start to believe Africans when they say they have not engaged in 'unsafe' sex, and take a look at other possible co-factors. Perhaps they will even look at non-sexually transmitted HIV and conclude with something more credible than peremptory dismissal.

Jennifer Downs, et al, have published an interesting paper on female urogenital schistosomiasis (FUS) and its association with HIV infection. It was found that women with FUS are four times more likely to be HIV positive. Various kinds of schistosomiasis and other parasitic diseases are endemic in many areas, especially in the authors' area of study, around Lake Victoria. In addition to possibly making women more vulnerable to HIV infection, FUS may also result in women being more likely to transmit HIV. In those infected, it may result in more rapid disease progression.

While FUS is more common in girls and younger women who are not necessarily sexually active, many still have FUS when they become sexually active. Once they are above school-going age they are no longer targets of school-based treatment programs, but this is the time many are becoming sexually active. Women should be treated for this debilitating condition as it can have serious long term consequences. But the fact that it may be associated with HIV infection should by now have attracted the attention even of those who still see diseases as being independent of other diseases, and that includes the vast majority of health and HIV donors.

FUS has not yet received the funding it needs, even though the authors estimate that the cost of controlling the disease may be as little as 32 cents per woman. Compare this to the $60 to $120 per man for the voluntary medical male circumcision (VMMC) program that is running in the very places where schistosomiasis and various other diseases are endemic. For some reason, circumcision is very attractive, despite the fact that the association between lack of circumcision and HIV infection is not particularly large. (However, it is impossible to accurately evaluate circumcision as a risk factor for HIV because the randomized controlled trials used to argue for the VMMC program did not establish how many incident infections during the trial were a result of sexual behavior and how many were a result of some other kind of exposure.)

Attempts at eradicating parasitic and other conditions are not unprecedented. Parker and Allen write about a mass drug administration program that aims to eradicate lymphatic filariasis. But they find that there is a substantial discrepancy between village-level and self-reported surveys of drug uptake, which tend to be low, and official reports of drug uptake, which are high. It is found that many people either don't receive or don't avail of the free drugs, for a variety of reasons. The official figures assure donors that the disease will be eradicated by 2020, which is what they want to hear. But the local figures suggest that eradication will not be possible without some big changes in the way the program is run.

Curiously, the authors remark that "if [parents] reject medication for themselves, then they are likely to reject treatment for their children". I don't doubt that the authors are right, but I have been finding it difficult to understand why most sexually active men in Nyanza,Kenya have been refusing the offer of free circumcision, whereas hundreds of thousands of males in their teens and early twenties have, apparently, been circumcised under the VMMC program. At least one of their parents must have given consent for the younger males to be circumcised.

Parker and Allen note that "context-free, pathogen focused NTD [neglected tropical disease] control is a return to 'magic bullet' medicine, and ignores the fact that vaccines and drugs do not cure neglect or poverty". The same could be said for various HIV interventions, including the VMMC program. They go on to say that "intense competition for funding discourages critical thinking and analysis", which is putting things mildly. Attempts to eradicate various diseases or groups of diseases have a long and unenviable history that includes the history of HIV.

You might think that those responsible for reducing HIV transmission and eliminating various diseases, such as schistosomiasis and lymphatic filariasis, would welcome suggestions as to how they could improve their results. But it seems that some programs report the figures their donors like to hear. If the donors were told the truth they might reduce funding. So there's certainly little to be gained from reporting low and declining uptake and effectiveness. Decades of 'context-free, pathogen focused programs' have shown that it's better to report good news. This is not good news for those suffering from various diseases, nor those at risk of doing so. But, when all else fails, blame the beneficiaries.



Anonymous said...

So do you regret doing your research on this, since it is unpopular and against the conventional wisdom? I ask because I am applying to grad schools with a research focus of the neurological and sexual consequences of circumcision, and am afraid I won't even get in because my research is against the CW of the powers-that-be, and that even if I get in, I will spend the rest of my life fighting uphill.

Simon said...

Thank you for your comment. I think it might have been better if I had gone in a direction where I could have eventually worked in the area I studied, something that hasn't yet happened. Perhaps it will happen, I don't know. Of course, conventional wisdom needs to be challenged, but I also need a job, so if I want to keep challenging it perhaps I need to work in something else. And that means I could have wasted a lot of time and effort that wont'g get me anywhere. I hope you have luck applying for a place and for funding. I think those will be a good start!

Anonymous said...

Well, good luck. Your blog is excellent and coming from an anthropology, I really enjoy your critique of sexual "misbehavior" as the only mode of transmission. I suspect this is for two reasons: 1) the old idea of oversexed and wild Africans; and 2) the history of HIV in America as a "gay" disease. I.e., it has always been sexualized in the U.S., thus it must be sexual elsewhere, and of course those backward savages are spreading it because of their wild ways. [Obviously I believe none of those things, but I suspect they are the unconscious assumptions of most of the HIV researchers.]

Simon said...

Thank you. Yes, I think HIV and even circumcision are examples of the West's desire to reassert "its moral and cultural superiority in supposedly post-colonial times" (citing an article from the English Guardian).