Sunday, May 23, 2010

UNAIDS: Mythmakers or Liars?

We have spent the last few days in Bukoba, talking to people about their memories and perceptions of HIV. Unfortunately, after decades of being told that HIV is primarily spread sexually, most people firmly believe that this is the case. They believe that HIV came from ‘somewhere else’ (Uganda, America, Europe, truck drivers, sex workers, men who have sex with men, etc), a widespread belief. In Bukoba, they believe (mostly) that it came from Uganda and this may be true. Alternatively, HIV may have spread from Tanzania to Uganda at the same time as it was spreading from Uganda to Tanzania. It seems likely that HIV spread in waves at various different times and its impact in a particular place depended on many of the conditions extant in that place at the time.

The problem with ignoring non-sexual transmission of HIV, through unsafe medical practices or through cosmetic or other practices where blood or bodily fluids may be involved, is that people end up not looking out for such risks. Even where they recognise their existence, they don't know how to protect themselves. For instance, people know that hairdressers should sterilize their equipment between clients but their neither the hairdressers nor the clients know what is required for equipment to be properly sterilized.

Contrary to widespread belief, HIV does not die after seconds or minutes of being separated from the host. It can live for hours or even days on instruments that dry out. And it can live for weeks if it remains wet. If a hair trimmer is used on a person with a disease that is transmissible through blood contact, it needs to be boiled. Just cleaning it in water is not enough, nor is wiping it with methylated spirits or bleach. Yet, people are convinced that this is enough. They even admit that they don't know one way or another what is done with the instruments. Manicurists just turn up with a bucket of instruments and do their work before going on to another client. They don't have the equipment necessary to sterilize their tools, nor do their clients seem to be aware that this is very dangerous.

One person we talked to said that she uses a hair relaxant that burns the skin and makes it liable to break. Hair relaxants are popular here, to produce straight hair. So combs and anything else used would need to be carefully sterilized, but the facilities for doing this are often not available. As a hairdresser, she was unaware that it is not just blood that can transmit infection. Pus is even more dangerous. She was under the impression that if people had sores on their head, this was not risky unless there was also blood. Decades of warnings about the risk of HIV infection have concentrated almost exclusively on sexual behaviour and sexual risk. So people are not adequately prepared for non-sexual risks.

Similarly, risks from unsafe medical procedures could be much more of a threat than sexual risks. People's perception of medical risks is that they will be taken care of by health professionals. This may be true in some cases, but not all medical procedures are carried out by health professionals or in ideal conditions. You can get injections, and possibly other services, from people who run 'pharmacies', often just stalls that have a few medicines. Needles may well be changed between patients. One certainly hopes so. But are syringes always changed? Many people say they don't know and they don't feel they are in a position to question doctors and other health professionals. And many injectible products are sold in multi-dose vials. But it has long been known that vials can become contaminated. This can easily lead to HIV and other diseases being transmitted to many people.

People may face threats that they don't even realise are there. And they may face threats that they have never been told how to deal with. There are ways to take precautions against non-sexual transmission of HIV (and other blood borne diseases) but HIV education campaigns concentrate almost exclusively on sexual risk. Although some people can trot out a list of other HIV threats, including shared razors, toothbrushes, cosmetic equipment and medical equipment, these are considered to be relatively unimportant compared to the risk of sexually transmitted HIV.

UNAIDS publishes a list of recent HIV related publications, along with the abstracts and some editorial comments. This list very rarely includes papers that discuss non-sexual HIV transmission, concentrating instead on the many articles that look at sexual risk or what is perceived as sexual risk. So, for example, there's an article about sex work and the 2010 World Cup in South Africa. There are warnings about the risk of becoming infected with HIV and other sexually transmitted infections, but none about the risk people may face if they have to go to a medical facility for treatment or if they visit a tattoo parlour or if they get their hair cut. And South Africa is a country with very high HIV prevalence.

Another article that UNAIDS highlights is about sexual behaviour trends in France from 1970 to 2006. Sexual behaviour became more 'risky', especially for women, during the period. The same trends in a high HIV prevalence country would have been blamed for high levels of HIV transmission. But because this is a low HIV prevalence country and European, no such pronouncements are made. Non-penetrative sex also appeared to become more often practiced, which, of course, is less of a risk when it comes to HIV or sexually transmitted infection risk. But in some African countries, sexual risk behaviours are low but HIV prevalence is high.

When the survey takes place in a country like France, people's responses tend to be believed. Similar surveys in African countries can elicit similar results, but the responses tend not to be believed if they don't correspond with the data collected on HIV. When, as is often the case, people in African countries say they have not had sex, they have not had risky sex or that they took precautions against risk, and they turn out to be HIV positive, it is assumed that they are lying, mistaken or forgetful. Yet, many of them are likely to be telling the truth but they were infected by some non-sexual route, medical, cosmetic or the like.

Similarly, women have often been infected with HIV while they are pregnant. They are tested early on in their pregnancy and initially found to be negative. But they are subsequently found to be positive when they are retested later. The earliest period of HIV infection is the most virulent. If a woman becomes infected while she is pregnant, the chances of HIV being transmitted to the infant is far higher than if she seroconverted some time before becoming pregnant. The conclusion of this paper is that couple counselling may reduce unprotected sex during pregnancy. But have the authors considered the possibility that some of the women were infected non-sexually? Did they even test the husbands to see if they were also HIV positive? Of course, if the husbands were HIV negative, the belief that HIV is usually transmitted sexually leads to the conclusion that the woman must have had sex with someone other than her husband. This is one of the reasons HIV has become so stigmatized. Husbands often accept the received view about HIV being mainly sexually transmitted. They believe the ‘experts’, not their wives.

There are many hints that a good deal of HIV is not sexually transmitted in African countries. So it's surprising that UNAIDS, WHO and others still hold on to the view that non-sexual transmission accounts for a very small proportion of all incidence. In most African countries, various prevention programmes have been run, some for many years. But these programmes are almost all aimed at influencing sexual behaviour. Very few are aimed at medical transmission and even fewer at cosmetic transmission. And these programmes have been quite unsuccessful. A number of papers have asked questions about which prevention interventions work and, on finding that none of them make much difference to HIV transmission, they keep looking for new ways of preventing sexual transmission. They don't seem to consider the possibility that at least some transmission is not sexual, though they admit that conditions in medical facilities are too dangerous to allow UN employees to risk using them! These papers are right to conclude that gender, poverty and alcohol consumption are important when it comes to sexual transmission of HIV but they are probably not so relevant when it comes to non-sexual transmission. Or, at least, they would be relevant for quite different reasons.

Similarly, a lot of research has shown that behavioural differences don't explain variations in HIV prevalence among young people in African countries. High levels of sexual risk behaviour can be found in places with low HIV prevalence and low levels of sexual risk behaviour can be found in places with high HIV prevalence.

How much evidence does it take for the 'experts' at UNAIDS to conclude that their long held view is wrong, that most HIV is not transmitted by heterosexual sex? How much evidence do they need to find it worth their effort to investigate places where many young children are found to be HIV positive when their mothers are not? If UNAIDS recognises the dangers of allowing its own employees to use medical facilities in African countries, when will they admit that Africans living in those countries also face risks?


It’s very disturbing to hear people saying that they think HIV was created in a laboratory in America and spread deliberately, for whatever reason this might have been done. But it’s hard to shake people’s beliefs in conspiracies when they are constantly being told things that don’t make sense. Many people here know that Africans are not so different from people in other countries that their sexual habits could be almost wholly responsible for the very high rates of HIV transmission you see in some countries. But those who feel they know most about the disease assure them that this is, indeed, the case.

Those who feel they are HIV experts continue to assert the racist view that some Africans have so much more risky sex than people in other countries, it’s no wonder that HIV prevalence is very high in some places. Africans are being lied to, just not in the ways they think. The people who are tasked with eradicating HIV know that the risk of non-sexual transmission of HIV is so high that they need to protect their own employees. They just don’t tell Africans that. As a result, Africans continue to take risks that they could and should avoid. When people know about the risks they face and they know how to take steps to avoid them, HIV transmission rates will go down. But as long as the sexual behaviour paradigm clouds all HIV prevention activities, several more people will be infected with HIV for every one who receives treatment.

allvoices

14 comments:

Claire said...

Hello,
This is interesting.
Are you gathering data on hospitals as you go? The hypothesis that most transmission is not sexual is testable. Gathering data on reuse or sterilisation of equipment in hospitals could be used to map the risk of medical transmission. This could then be spatially correlated with prevalence. You're a thinking person out there, it would be great if you collected some good data as you go!

Simon said...

Thanks Claire
No, we are not doing that sort of work, we don't have ethical clearance and those questions we would need to ask are not welcome here. We are asking people what they know about the risks they face and if they know how to protect themselves.

UNAIDS admit that there are risks involved if you have to visit health facilities here, that's why they advise their employees and others connected with the UN not to use facilities and to carry their own syringes and needles.

But they don't extend the same privilege to people who are not lucky enough to work for the UN or other rich organizations, who are not even obliged to use facilities intended for mere mortals.

Some people here say things were worse years ago but that now health facilities never reuse syringes or needles. However, others say that they don't know and they don't feel they would be able to question health professionals.

As for cosmetic treatment risks, people are quite clear, hairdressers and the like make some effort, sometimes, but most people are not even aware of the risk or or how to avoid it.

It would be great to test the hypothesis more carefully but there is actually a lot of evidence available and we are trying to find out what members of the public know and don't know.
S

claire said...

It's certain that iatrogenic transmission happens. It would be really interesting to see if it's at all explanatory of regional prevalence - if so a reallocation of resources is immediately required! Seems such a waste that there's data all around you going uncollected...

Simon said...

Hi Claire
The thing is, there is already a lot of data for a lot of countries. The problem in African countries is that evidence of such transmissions are not investigated. There are many children who are HIV positive whose mothers are not. And the percentage of men married to HIV positive women who are negative for Kenya and other countries is far higher than can be explained by some of the 'reasons' that have been suggested,usually amounting to saying that Africans have a lot of sex, risky sex, even transactional sex. So we are asking people how much they know about non-sexual transmission and how to protect themselves. People know very little, most have never heard of anything but sexually transmitted HIV and they think they face very few risks. Sadly, many people who think they face very few risks have been infected, perhaps non-sexually. There is plenty of data but it is being ignored. Much of the data is referenced in David Gisselquist's book Points to Consider, which is available free on the web:
http://sites.google.com/site/davidgisselquist/pointstoconsider
S

Deena said...

Hi Simon,

Great post- thank you! I'm a PhD researcher and am currently writing a chapter of my thesis on exactly this phenomenon. I'll be presenting a paper on my theory of 'Institutionalized Racism' being behind this unfortunate misperception about purely sexual transmission at the end of June in The Hague. To tell you the truth though, I had never thought of the possible risks through cosmetic procedures. Do you by chance have any peer-reviewed materials that discuss this? It would be interesting to talk more about this with you.

Kind Regards,
Deena

Simon said...

Hi Deena
Good to hear people are studying the subject! Yes, there is quite a lot of material available. Most of it is linked to in David Gisselquist's book 'Points to Consider', which is available free of charge on the web:

http://sites.google.com/site/davidgisselquist/pointstoconsider

I can have a look through what I have but I think all of it should be referenced there. And if you contact David I'm sure he'd be happy to send you anything else.

David and I have just finished a couple of week's trip around Lake Victoria, talking to people where the HIV epidemic in East Africa probably started and where prevalence is often far higher in the three countries as a whole.

I have posted several things about the trip and will continue to do so. I hope your talk goes well but it's a hard subject to get across. It is the very fact that the racism is institutional that makes it a hard nut to crack. A handful of institutions have all the power and money when it comes to HIV and none of them are run by Africans. And even Africans involved, such as the head of HIV in Uganda that I mentioned yesterday, seem to toe the party line, whether because that's how they get their funding or because they are convinced by the 'arguments'.

Anyhow, good luck and feel free to ask anything, I'd love to hear how your talk goes. I'm pretty isolated from such things here!
Regards
Simon

Deena said...

Great- thanks Simon! I've been using a lot of David's articles regarding nosocomial transmission and the book is at the top of my 'to read' list so maybe I'll be able to integrate some aspects of 'cosmetic' transmission in a re-write later. I'll definitely contact him in the near future too. It's true that it's very hard to get these points across to many people and, as you said, because of the institutionalization, these ideas of extraordinary sexuality in Africa have very much been 'internalized' meaning I get a considerable amount of resistance to my ideas from African researchers as well! Textbook structural violence.
ps: Do you do any studies/work in Moçambique by chance? That's where I'll be doing my fieldwork in the near future.
Thanks!
Deena

Simon said...

Thanks Deena, do read David's book, it's quite an eyeopener. I've been resisting the behavioural paradigm since I started studying HIV about 8 years ago but non-sexual transmission gives the argument the best leverage.

We found African researchers are very willing to discuss the issue, although they are full to the brim with the stigmatizing attitudes of the mainstream. But they also wonder why so many children with HIV negative mothers are infected, why so many women are infected whose husbands are not and various other anomalies.

People are well aware of the dangers of medical treatment here and the impossibility of questioning the authority of health professionals. But they also know what health facilities look like and agree that it's not credible that hardly any nosocomial infections occur in them.

Cosmetic transmission is interesting and we heard a lot of things from people. We even saw instances of people getting manicures and pedicures in the street, given by men with buckets of equipment but no sterilizing equipment. Also, headshaving with razors and various other things. Most people believe the rubbish about HIV not living outside the body for more than a few seconds when this has long been known to be untrue.

But there are people here who are quietly working to change things. There really is a fear of losing funding by rocking the medical transmission boat, there's no better way of annoying the hierarchies in UNAIDS, CDC, WHO and elsewhere.

I'll see if I have anything about cosmetic transmission at home but you probably have enough on your plate. I'll also see if I have anything about Mozambique, much harder to find anything about it as research and publications follow the money and I don't think there's been much HIV money there.

I'd love to see a copy of your talk once you've given it.
Regards
Simon

Deena said...

Great- thanks again! I'll definitely let you know how the talk goes and will send you a link to the working paper once it's up (probably July).

Exactly right! I've also found that the HIV-positive children with HIV-negative mothers has also been a very clear way to bring home the point as the "they're lying" response is so hard to get around when speaking of teenagers and adults who report either not engaging in sex or of only engaging with their (HIV-negative) partner. Obviously getting people to believe that adults treated in STD clinics or even pregnant women may have gotten HIV from a non-sexual source is particularly difficult.

Now that I've come across your blog, I'll be following with great interest! Keep up the great work!

Talk soon!
Deena

Simon said...

Thanks Deena, I look forward to hearing from you.
S

David said...

Hi Claire, Deena,

There is lots of evidence that many hospitals and clinics in Africa do not routinely and reliable sterilize instruments. See, surveys of clinics and hospitals (Service Provision Assessments, at: http://www.measuredhs.com/aboutsurveys/spa/start.cfm) in Ghana, Guyana, Kenya, Rwanda, Tanzania, Uganda, and Zambia during 2001-07 found that only 55-89 percent (median 68 percent) of facilities had equipment to sterilize instruments (through autoclaving, high-level chemical disinfection, dry heat, boiling, or steaming).

There is similarly no lack of evidence linking HIV infections to health care in Africa. Eg, a recent study in Malawi followed low risk women, testing them every 3 months; in a subset of women questioned abour risks, 23 of 27 with new HIV infections had received depo injections 3 months previously (see: Kumwenda et al, ‘Natural history and risk factors associated with early and established HIV type 1 infection among reproductive-age women in Malawi’, Clin Infect Dis, 2008, 46: 1913-1920).

As for the response to evidence, lack of money is not the problem; it's a lack of medical ethics. What is required (but missing) is(a) to warn Africans at risk, and (b) to investigate suspected nosocomial infections.

As Pogo said "We have met the enemy, and he is us!" Think of all the European and US organization that advocate health care for Africans, especially women and children, gender equity, human rights, ending violence against women, etc -- None of these organizations asks for investigations of suspected nosocomial infections, or warning African women about unsafe health care.

Deena, in Mozabique, you might try to contact Paula Vaz, who has published on children with HIV but with HIV-negative mothers. See:
http://diss.kib.ki.se/2010/978-91-7409-772-6/

As for HIV transmission via cosmetic procedures, a study in Kenya looked at a lot of the risks (see: Ounga, Int J STD AIDS, 2009; 20, pp 19-23) but did not try to measure HIV infections related to risks. Some studies link HIV to tattooing. Some studies from China and Italy link hepatitis B and C to shaving, tattooing, manicures, etc. Few studies of risks for HIV in Africa have asked about cosmetic procedures -- more work needed in this area!

Best regards,
David

Simon said...

Hi Everyone
Thanks for the comments. You're right David, women don't seem to see it as a women's issue. I met a Japanese woman who says she works with HIV positive women and she is hoping to 'reduce stigma'. But she is utterly convinced that they were all or mostly infected by their husbands. She says most of their husbands died of HIV so they must have been infected by them.

Aside from that non sequiter, she saw the main issue as women being abused by men who sleep with other women and then infect their wives. She didn't question why so many more women are infected than men, or anything like that.

She was a bit vague about how she was going to be able to reduce stigma when she was explaining all or most infections by sexual routes. That's one I'd like to understand.

Thanks for the links and all the best.
Simon

Deena said...

Thanks so much for the information and the guidance David! I have a proposal of sorts for you, so I'll e-mail you shortly to get your take on it if that's ok...
Take care,
Deena

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