Monday, December 17, 2012

HIV: We May Not Know Best, But We Know Better Than You

My blog posts are a response to people I've met, things I've read, thoughts I've had and the like. The following post is partly inspired by, and wholly dedicated to, someone I met today. I hope it is the beginning of a fruitful exchange of thoughts.

If someone decides that they are not going to take medication and you want to reassure them that the drugs are safe, or that they are for the best, what do you tell them? While arguing that the fact that some drugs have turned out to be unsafe doesn't mean all drugs are unsafe sounds logical enough, would this change someone's mind? Surely the fact that some widely used drugs have serious side effects and can be prescribed to people to whom they do more harm than good would only increase their concern. And if you conclude that their concerns are legitimate, what if they also decided that they would not allow their child to have medication that had known side effects, and perhaps were not even specifically recommended for children?

I'm not opposed to the use of medicines myself; I would go to a doctor if I felt I needed to and I would bring a child to a doctor if I felt I needed to. I would also strive to take the doctor's advice. But there could be instances where I disagreed with the doctor. An example could be a urinary infection, for which the doctor recommended (male) circumcision (not that I think this would generally happy, just that it is sometimes cited as an argument for circumcision). Kids get all kinds of infections; some just disappear and others can be treated with drugs. The fact that the doctor recommended circumcision would not persuade me to have the child circumcised. If the condition was clearly caused by lack of circumcision and would be likely to persist or recur without circumcision, then I might consider it.

Mass drug administration (MDA) in countries where there is little modern healthcare is very difficult. People don't come running to the clinics just because they don't normally have access to free healthcare. Rather, MDA programs take a long time to prepare and involve a lot of work, and still often result in most people either not receiving the drug or not taking it. Rigorous programs to eradicate serious conditions such as lymphatic filiarisis (LF) do not always produce good results quickly. LF can lead to elephantiasis, causing grotesque swelling of the legs and scrotum. It is very visible. But people who do not have it, or have no symptoms, do not necessarily see the point in taking drugs.

It's quite natural to question the use of some drug or procedure, whether it is supposed to prevent or treat something. It may not work or it may have side effects, maybe even side effects that are more serious than the condition to be treated or prevented. In countries where healthcare is rare and safe healthcare is even rarer, questioning the need for or safety of the drug or procedure may be even more important. For the very reason that the threat is greater, the need for questioning is also greater. And yet, in places where healthcare is scarce and not too safe, MDA and other blanket programs tend to be paid for and implemented by outsiders, people whom those receiving the drug or procedure have no reason to trust or obey (because it is obedience that seems to be expected).

So what can we make of these figures in the Washington Times that show that 1.5 million Africans have been circumcised, or have given consent for their children to be circumcised? If it is difficult to persuade people to take drugs how could it be so easy to persuade them to be circumcised, or to allow their children to be? It is thought that adults who decide not to take drugs, such as those for LF, don't give them to their children either. That also strikes me as being quite natural. If it's not good for you why should it be good for your children? So why have 1.5 million people agreed, or agreed on behalf of someone else to be circumcised?

It may seem shocking that someone would refuse medication, and even more shocking that they would refuse medication for their children. But it seems even more shocking that some people don't have the option to refuse drugs or procedures that they believe to be either unnecessary or harmful. If the Washington Times figures are correct, how was this brought about? Were people put under pressure? Were they lied to? Were they made to think that their children would benefit from the treatment, or that their lives or their children's lives would suffer serious consequences if they did not comply (or obey)? It's shocking enough that "leading public health and anti-AIDS groups have set a goal of circumcising some 20 million men in 14 Africa countries by 2015", but why have 1.5 million people already given in and been circumcised?

Were they told they would be infected with HIV (or a host of other diseases the circumcision campaigners have added in), or that their children would be infected? Were they told that everyone is doing it, that women also like men to be circumcised, that it is hygienic, etc? It seems that many of these claims are being made, but none of them are completely true; none of them, on their own or together, constitute good or legitimate reasons for being circumcised or for having a child circumcised. Adults can quite safely decide to be circumcised or not. But why should they be persuaded to make that decision for their children? Are they told it's less painful, less difficult, safer or whatever else? Because none of these claims are true in any useful sense.

I am happy to accept that there is a virus called HIV and that it generally causes AIDS, but there are many questions about HIV transmission, such as why the most serious epidemics are in a few parts of some countries. I also do not accept that HIV is mainly sexually transmitted, nor even that sexual behavior among people in places where HIV prevalence is high is significantly different from other places, where HIV prevalence is low. Therefore, I can not accept that circumcision will reduce HIV transmission significantly; and I certainly don't think reducing HIV transmission could be a reason for deciding to have infants and children circumcised when they can easily be allowed to grow up and make this decision for themselves. As for the drugs, if I was very sick I would hope to find something to make me better, and I would hope for the same for my children.

But there is little I can say to reassure someone who refuses drugs, for HIV or any other disease, for themselves or for their children. Even if 99% of advice that our healthcare experts give us is good advice, how can we tell which is the 1% (although I'm pretty sure the figure is not as high as 99%)? Public health programs seem to require high levels of adherence (or obedience), but is adherence more important than benefit? It seems that public health programs may place a higher emphasis on everyone doing what they are told, for their sake or for the sake of someone else, or everyone else, regardless of whether they benefit, or even if they suffer undesirable consequences.

While we might wish to think we have some autonomy when it comes to public health for ourselves and our children in Western countries such as Ireland, compared to people in developing countries anyhow, maybe we don't always have as much choice as we think. Perhaps that needs to be put to the test. This is true of HIV, especially, because it's often presented to us as a matter of individual responsibility and individual behavior. If that's true, why should we make a decision about whether to take or refuse a drug or procedure, for ourselves or for our children, for the greater good of the population as a whole? I know I have a choice about certain things relating to health, but I know I don't have a choice about others; if I were to be HIV positive, or if my child were thought to be positive or at risk of being infected, decisions would not be entirely in my hands. If 'reassurance' were enough to persuade someone to avail of a drug or procedure, for themselves or their child, I'm not yet in a position to give them that reassurance.

[For more about non-sexual HIV transmission and mass male circumcision, see the Don't Get Stuck With HIV site.]



Petite Poulet said...

Circumcision is always about power and control, so do not look for rational explanations. At the last HIV industry junket, the discussion was all about marketing circumcision. They realize that selling circumcision as an HIV preventive has come up way short, so they are looking for other ways to market it.

I have always believed that the main reason to for the West pushing circumcision in Africa is to bolster the falling circumcision rates in the United States. The rates in the United States have proven useful in circumcision proponents in Germany, as they used the high rates in United States justify their position. It is all a house of cards.

People need good information to make decisions. They have to understand the balance of risks and benefits and the probability that an intervention will help or hurt. A recent study of women in Africa found that most of them had heard the expression "partial protection" but none of them could explain what it meant. How is circumcision is expected to have an impact when the people it is implemented on don't understand what partial protection means. Keeping the message simple or sticking with interventions that are simple to explain have the best chance of success.

ART as secondary prevention has the benefit of increasing the survival of the infected person taking the medication. That is much easier to sell. That it prevents transmission of the virus to others is nice, additional benefit.

Simon said...

Yes, but I think public health seems to be about power and control, which is a lot more worrying to me. Is any medical procedure a matter of those selling drugs and healthcare foisting in on people whether they want it or not? Providing healthcare is clearly desirable, to me anyhow, but forcing people to do what some authority wants is another matter.

Providing healthcare for children is also desirable, but what if you are not able to guarantee the safety of certain drugs or procedures? Should some authority be able to force these on your child, even when they know that there are risks, or when they have not been able to rule out risks because of the difficulties of testing drugs and procedures on infants and children?

Yes, people need good information, and the education to be able to use that information to make decisions; but the education is often missing. And where that is also missing, the bullying and force involved in public health programs may slip by unnoticed. Even where the education is present, there are circumstances where people can be forced to accept healthcare, or it can be forced on their child. This may be something that has developed in democracies, but what about when the same principles are moved to less democratic regions, and to places where safety is simply not part of the package?

Perhaps I've been viewing things like democracy and public health with rose tinted spectacles and I know Western countries don't really give a damn about the health or circumstances of people in developing countries. But I'm wondering if public health is not itself inherently dictatorial, in Western countries also? Where most people's safety is reasonably guaranteed in Western countries, they might still choose the health services available. I would. But in developing countries, where the health services are of little benefit, or are harmful, public health could be even more dangerous; where rights are routinely denied, public health could be adding to the denial.

Sorry, thinking out loud, probably because I should be concentrating on finding a job.