Wednesday, September 1, 2010

Does the HIV Industry Despise Africans or Just Sex in Africa?

While I commend any activism that opposes the numerous ongoing national and international failures to deal with the HIV pandemic, there is an attitude that treatment for those infected is more important than maintaining the negative status of those who have not been infected. The two are equally vital and they should never be seen as being in opposition. Treatment activists have their legitimate agenda but they sometimes make it clear that they forget that health is a property of whole populations, it is not just a matter of having or not having some disease.

During the recent Vienna Aids Conference, Mark Heywood executive director of Section 27, was widely quoted as saying: "The testing campaign [in South Africa] is only a means to an end...; its intention is to give people access to treatment and to other healthcare services. However, if treatment is not actually provided, then the means cannot be justified."

Mr Heywood is quite wrong. There is talk of testing 15 million South Africans. Are we to believe that this massive number of people is to be tested and no effort made to find out how those who are infected became infected? Is South Africa going to copy the mistake made by most HIV/Aids institutions for nearly thirty years? Will everyone in the HIV industry just continue to assume that HIV is transmitted sexually in African countries, and allow sources of non-sexual infection to continue, unabated?

Testing for HIV is not just the means to one end, that of treating people. Everyone who is infected has the right to treatment, I'm in complete agreement with Heywood there. But people who are not infected have the right to stay that way. And establishing how they can achieve this is another, equally important, justification for mass testing. If we continue to ignore some routes to infection, people will continue to be infected. If campaigns for treatment for all HIV positive people fail to take account of this, the scope for treating everyone infected will start to narrow very rapidly.

Those who advocate treatment for all HIV positive people, and I am one of them, must also advocate for prevention campaigns that are based on the realities of how HIV is transmitted, whether it is transmitted through unsafe sex, unsafe healthcare, unsafe cosmetic practices, intravenous drug use, or any other way. Claiming that mass testing is only justified if those found to be positive are guaranteed treatment is disingenuous and counterproductive.

In the same article, the Nigerian activist Morolake Odetoyinbo said that testing for HIV had been scaled back and was now targeting "people considered to be at high risk, such as sex workers, injecting drug users, truck drivers and people with TB. This stigmatised testing."

Quite, it stigmatizes testing in a very specific way: it assumes the truth of the behavioral paradigm, the assumption that most HIV is transmitted sexually (in African countries) and has the corollary that all (African) people need to do is 'change their sexual behavior' in order to avoid being infected with HIV. Yes, it includes injecting drug users; they also are a stigmatized group. But the majority of people in African countries are not members of any of these groups. Even the majority of HIV positive Africans are not members of any of these groups.

If the Nigerian government wants to follow in the footsteps of other African countries, who have received all their HIV advice and funding from prejudiced Westerners (the HIV industry), all the worse for Nigerians. If you assume that most HIV is transmitted sexually, you will not be looking for non-sexual exposure, nor will you take any measures to avoid it. Nigeria could quite easily pass out South Africa and become the top country in the world for the number of people living with HIV.

Regarding stigma, Odetoyinbo goes on to say “It’s beyond access to medication”. What is the use of life if there is no quality of life? What is the use of life if you just give me pills to stay alive? I don’t want to be alive when there’s such circumstances. I still need my dignity as a human being.”

The HIV industry has set the agenda, the stigmatizing, prejudiced, sexist agenda, that HIV is just a matter of sexual behavior in African countries. With the HIV industry's view of HIV, you will never have dignity. But you can not deplore the stigma without also deploring agenda. And first, it needs to be clear what exactly is being stigmatized. It is sex, simply that. People may say it is unsafe sex or illicit sex or any number of things, but in reality, they object to sex.

Consider that in the early days of development theory, development meant no more and no less than population control. Many institutes haven't gone beyond that development paradigm. And many of the big organizations working towards the aims of that paradigm, to reduce populations in poor countries, are the same organizations claiming that they can reduce HIV transmission by influencing people's sexual behavior.

They were not very successful in reducing birth rates, they are not having much effect on HIV transmission and they will continue to fail, despite receiving the lion's share of funding. Among them are Population Services International, Family Health International, The Futures Group International, the Guttmacher Institute and the Rockefeller Institute, but there are others. A lot of institutions that use terms like 'hygiene' and 'public health' (and various other euphemisms or euphemistic uses of words that sound innocuous enough) have similar histories.

Sex is what people and institutions object to, or say they do. They don't give a damn about diseases, there are plenty of them, sexual and otherwise, but they aren't putting any of their time into reducing their transmission. Sex is what journalists like to write about and what donors like to fund and what politicians make their careers out of condemning and what the public likes to read about. But HIV is a disease, it is not sex, unsafe or otherwise. It is spread in a number of ways, sex being one of them. But the conditions under which people have sex go way beyond mere sexual behavior. Those conditions are part of what makes us human.

Sex is no more wrong than breathing, which transmits TB; drinking water, which transmits water borne diseases; standing too close to someone, which transmits many diseases; eating food, which transmits some of the biggest killers in developing countries; crossing roads, working in mines, playing football or walking home alone on a dark night.

Nor is it sexual abuse, sexual violence, female genital mutilation, male genital mutilation, gender inequality or any other forms of abuse that are responsible for HIV epidemics. They should all be outlawed, but they existed before HIV did and they will continue to exist after HIV ceases to exist, should such a time come.

Some people, who accept that there is nothing wrong with sex, make the objection that if it is recognized that HIV is not always transmitted sexually, that those who are found to have been infected sexually will still be stigmatized. But it is the sex that is being stigmatized, not the HIV. The disease (and people who are infected with it) are stigmatized because of the association with sex. If you think that there will be two tiers of HIV positive people, the sexually infected and the non-sexually infected, you too are moving the target of the stigma!

That people have objections to sex is a complex problem with a long history. It won't be solved by conflating it with something else. HIV, and many other diseases, are being transmitted rapidly when they could all be controlled, to some extent, and many could be prevented or cured. HIV testing needs to ascertain how people become infected, if at all possible, not just whether they are positive or negative. Reading humanity's sexual hang-ups into HIV transmission has allowed the disease to become a pandemic. It could get a lot worse, and it probably will if we don't take our prejudices out of our HIV prevention policies.



Anonymous said...

my mum was diagnosed HIV+ a few days ago. She's 66 yrs old. my dad passed away more than a decade ago from cancer (not AIDS), my mum has not been sexually active since-- this is a fact. we have no idea -- and neither does she, how she could have contracted the virus .. she's old fashioned so to a certain extent she believes someone bewitched her (!).it's unfair, frustrating, depressing. shes such wonderful human being. we absolutely have no clue how this could have happened so we are speculating that somewhere, somehow could have been via hospital.. she's had some injections a few years ago and blood transfusion in 1987 but that's ages ago so no clue.. bottom line, sexual transmission is not the cause here

Simon said...

Thank you for your comment. I'm very sorry to hear that your mother has been diagnosed HIV positive. But now that she knows, she should be able to receive treatment as soon as she needs it and, with a bit of luck, live for many years.

HIV prevalence is quite high among older people in some countries and this has not been well investigated. Of course, it wouldn't be, because the mainstream assume that it is almost always sexually transmitted! But every unusual instance should be investigated by all the people involved. There should be medical records, to start with.

One of the things that woke me up to the injustice of the constant assumption that HIV transmission is sexual, so anyone (any African) who is HIV positive must somehow have had unsafe sex, was seeing people refuse to take treatment and dying as a result.

To assume that they were infected sexually, regardless of what the person may reveal about themselves, is disgraceful behavior in a professional of any kind and an inhuman way to treat someone.

I felt people were being degraded, slighted, mocked and humiliated, often right up until they died. The worst treatment can even come from those who are supposed to be helping.

Some people just refuse to believe they are suffering from a disease that is transmitted sexually, and they are right. So many have died and many will die because if they refuse to believe they have HIV and refuse to accept treatment, most of them will become very sick, eventually, and die.

I hope your mother finds peace in knowing what she does about herself and that she ignores anyone who tells her otherwise, no matter who they are. And I hope she gets all she needs to stay healthy and happy.

You may be right that a transfusion more than 20 years ago is not related but it would probably be a good idea to discuss the matter with an expert, maybe even several experts, if that's possible.

Anonymous said...

many thanks for extensive response!thankfully my mum has a good support network of family and friends around her -- we find out her cd4 count and viral load on saturday so she can start her meds then

Simon said...

No problem, I'm glad to hear things are proceeding well. I hope everything goes smoothly. And it's good to question things because so many people think they are protected from HIV just because they abstain from sex or take other precautions. Until it's widely accepted that HIV can also be transmitted non-sexually, many people will continue to be at risk.
All the best

Anonymous said...

Hi Simon, unfortunately my mum doesn't want to go on meds right away.. she has an unbelievable Cd4 count of 1 (!) no not 10 or 100 but 1, VL 10,000. she needs professional counselling -- she actually doesn't seem to understand the gravity of the situation so she wants to go to hospital only when she feels "stronger"..we are freaked out about this. I live in Europe.. will probably hope on a plane in the next few days to go home, in meanwhile but my bros are there, at their wits end. Do you know of any organizations in kenya that do in-home counselling? I think once my mum speaks tp an HIV counselor she'll be more willing to see an HIV specialist doctor.. any insights on professional counselling in nairobi would be great

Simon said...

Hi, I think the best and the quickest thing you could do is get your mother's GP/Family doctor, or some doctor, to visit her and refer her to someone who can counsel her at home.

Many counselors, I think all the ones I have met, have a very brief training, though they may have a lot of experience. It sounds as if your mother should consult with someone who has very broad knowledge and experience, so a doctor would be in the best position to help.

Any good doctor should be able to refer your mother to the right person so you can arrange for a home visit. And if that doctor decides your mother should see a counselor, then they should also be able to direct you to the most appropriate one.

All the best

Simon said...

By the way, feel free to contact me by email if you need to:

collery (at) gmail (dot) com

David Gisselquist said...

This is a note to anonymous. I want to reinforce what Simon says. A lot of people get HIV from injections, dentists, etc. But because so much of the talk has been about sex, people get confused.
If your mother had malaria, would she take quinine? If she had TB, would she take medicine?
HIV is like other diseases -- but the stigma may be confusing. It's just something to treat.
And your mother might need to be a bit hard-headed. When counselors or doctors ask anything about sex -- just tell them what-for! There should be no stigma about this, but there is. So that's where a hard head is needed.
Good luck!
David Gisselquist