Thursday, July 24, 2008

The medical industrial complex hates losing control over patients

Germans have an apt word to describe the knowledge professionals of all colors deploy to maintain their stranglehold on patients and clients. It's essentially about control. Lawyers would hate nothing more than if we suddenly understood their legal jargon. Medical doctors and the authorities maintaining their Herrschaftswissen (loosely translated with 'knowledge to rule' I presume) are similar creatures. I have recently investigated to what extent people at risk for HIV infection can take some control over their risks and lives back. What's happening in Canada is not very different to many other countries, but no less unjustifiable.

So, let me start with the easy and arguably uncontroversial one: Rapid HIV testing. People who, for on reason or other, have run an HIV infection risk can either go to their GP, get counselled and a prescription to do a test in a lab. So, first they have to wait to get a doctor's appointment. In the 150k people city where I live ten-thousands have no GP due to a shortage of doctors. Anyway, I digress. They finally get the prescription for the test. Well, next they need to go to a laboratory to get the testing done. Don't naively think they'd be able to get their test results straight from the lab. Nope, no chance. When the lab has eventually done its work it sends the result to the GP and the person who got tested needs to wait for another appointment to find out the result. Weeks will by now have passed, and so plenty of incentives have accumulated not to jump thru the various loops and hoops, and just not do the test or get the result. Testing is hugely important, because timely life-preserving treatment relies on knowledge of a given patient's infection.

There's a way around this, these days rapid tests exist that could permit you to get a result within half an hour. A perfectly reasonable ethical argument could be mounted in favor of having this test available OTC (over the counter, without prescription). If nothing else, such a move would hand control back to people at risk for HIV infection. This, however flies in the face of everything the medical-industrial complex stands for. So, no easy access to this test for you and me. -- As an aside, and I am talking from personal experience here, this is the country where acyclovir, a substance used to fight quite efficiently those bloody blisters many of us have on-and-off on their lips, cannot be bought OTC without a prescription either. I'm sure you'll appreciate the irony that One-Pounds shops in the UK sell it to you by the gallon if you wish. No all-important doctor's prescription necessary in the land of John Stuart Mill... -- Anyway, back to the rapid tests. You can do the rapid HIV test in Ontario at various anonymous testing sites. Access to the test is available through various public health facilities and clinics in the province. However, to ensure that nothing is ever as straightforward and as easy as it should be, that isn't made easy either (try finding information about testing facilities on the web at the time of me writing this ranting, and you'll see what I mean). I checked with one facility in Toronto, its waiting lists are more than 2 weeks long and they do not make appointments beyond that. In other words, there's a significant unmet demand by health conscious people who are at (self-identified) risk of HIV infection. The needs are nowhere met in any appreciable manner by Ontario's public health care system.

My hunch is that the reason for why these waiting lists exist has to do with the counselling hoops and loops people who want to get tested have to jump through each time they have a test. Historically, these hoops and loops were designed to ensure that people understood the test and its consequences, and, indeed, to give them an opportunity to say yay or nay to the test (informed consent or informed refusal). Ie they were an empowerment tool brought about essentially by AIDS activists. Indeed, there was a time where we had the test but no treatment, so it wasn't clear what the value of knowing was (at least knowing wasn't a cost neutral, or no-brainer type thing). Well, today we have good treatments available and it is in an infected person's best interest to know. For better or worse, the testing regime available in the public health care system falters in the face of very significant demand (even fails to inform those at risk about the availability of rapid testing). If you think that this is a problem in Canada alone... you're way off! Singaporeans struggle with the same problem of insufficient capacity to deliver rapid tests. All that's needed to be done really is to take the access control out of the hands of the health care system and permit access OTC. But that would mean relinquishing control. And that's not gonna happen in your or my lifetime.

Now, you may or may not have heard of post exposure (to HIV) prophylaxis (PEP). I have been working in medical schools for most of my academic life, so I learned that PEP is a pretty efficient means to reduce an infection risk AFTER exposure has taken place. Medical students at my school in Johannesburg got it frequently after needle stick injuries and so did many of my colleagues for the same reason. Btw, if there ever was an efficient tool of persuading people to protect themselves against HIV infection it's probably to let them have access to AIDS medicines for a couple of weeks (a typical course of PEP). Experience the side-effects of those medicines and ask yourself whether it's really really worth it :). Mind you, you will get over those at some point during the course of the treatment, but they will hit you first.

One way of taking control over one's life back, to some extent, would be to have PEP available as a last resort if one belonged to a high-risk group (ie people belonging to groups in society where the prevalence of HIV is significantly higher than among the rest of the population - eg gay men, IV drug users - possibly if you live in a developed country, migrants from subsaharan Africa). Say, you have sex with someone belonging to an identified group with a higher than average HIV prevalence. You duly use your condom, and, bummer, the thing breaks, slips off or does any number of unsafe things that ideally shouldn't have happened. Any GP worth her money would tell you that unless you can be certain that your sex partner is HIV negative, you MUST get on PEP ASAP, latest within 48 hours. So, the theory goes, you leave your bedroom (likely in the middle of the night) trek down to your local hospital and you pray that there is someone about who knows what to give to you. Common sense and respect for us as persons would demand that access to such medicines should be available by means of prescription (ie you could have it at home). Giving people easy and stress-free access to such means to protect themselves, of course, would be simply too easy and too obvious a solution, hence the required mid-nightly panic attack visit to the local hospital (if there's one where you live).

So, AIDS activists, if there's any left that are not salaried part of the very same medical-industrial complex, there's plenty of work to do!

1 comment:

  1. Great post Udo!
    I'm from Argentina and I heard of PEP, by a friend of mine who experience a situation similar to what you describe.
    According to my friend, side effects where not funny at all. But you forgot the social effects of taking antiretrovirals. When he had to buy the medicines, he recall felling the farmacist's stigmatizing and discriminating look over him.


Note: only a member of this blog may post a comment.

Certainty is not a defensible standard for policy making in the context of assisted dying

I mentioned in a Bioethics editorial a while ago that new frontiers are opening in the assisted dying debate. As an increasing number of...