There has always been a balancing act between what science or even common sense suggests what’s best for us and our right to freedom of choice, to do what we think is right for our bodies. That applies to both prevention and treatment decisions. Sometimes we have got it right like saying “give people relevant and accessible information to make them feel in control of their sexual health“. Sometimes we get it wrong, like the highly prescriptive, but once popular “use a condom every time.” Over time we have become increasingly human rights friendly – and who can argue with that?
That balancing act between the perceived attractiveness of biomedical solutions and what a person thinks is best for them, informed or not, can bubble under the surface in ways which it is challenging to resolve.
What happens when it’s clearly in a person’s best interests to go down a certain path – but they are not feeling it – or perhaps not understanding it; starting treatment early for instance, where the evidence is clear that it's a smart move. Maybe the person feels they are not ready; maybe the person feels the evidence is not compelling. Maybe they are scared of side effects. Maybe they try to persuade others that the evidence is not compelling also.
That’s what I want to address today. Because there is a lot at stake when that happens, not just the consequences to a person’s health and that of others they may try to influence, but also on big picture items, like our ability to reach 90-90-90 targets, which is heavily dependent on people not only being tested and then engaged in the healthcare system, but on treatment.
It’s a difficult conversation.
Science has come a long way. We know that treatment is good for us, right? That it all but eliminates the risk of onward transmission?That nowadays it’s easily taken and has relatively few side effects? That it makes sense to start treatment early? But that knowledge is not uniformly present and so treatment decisions remain the subject of debate within the community, where what he have learned from science is slow to penetrate, if at all.
We have, after all, a love-hate relationship with big pharma and its products. Some community leaders have resisted the “medicalization” of HIV prevention and therapy for decades. Some, in 2016, continue to do so. Treatment denialism still exists.
Treatment decisions can be complicated. But they can also be plain dumb. I can’t think of a better example of the dumbing down of treatment issues than in the Charlie Sheen affair.
A mixture of treatment denialism, quackery and ignorance reached new heights, very publicly, in the Sheen affair. He’s one of our own, of course, but that didn’t stop him spinning a damaging tabloid TV tale of abandoning his antiretrovirals that were causing him migraines and “poopy pants”. Along the way, Charlie said this . . .
“I’ve been off of meds for about a week now, and I always feel great. And yeah, am I risking my life? Sure. So what? Um, I was born dead. So that part of it doesn’t faze me at all. I told my mom on Day 1 that the disease picked the wrong guy if it wanted to stay alive.”
Charlie’s endorsement of goats' milk quack medicine, courtesy of one Dr. Samir Chachoua, who, incidentally is not licensed to practice medicine in the U.S but claims to be able to cure anything (?), soon lost its steam when Charlie's virus became detectable.
But the quack doctor wasn’t stopped. Chachoua subsequentlly went on Bill Maher’s TV show where his dumb treatment message got an inexplicably sympathetic hearing from both host and audience, (Watch the travesty here - and if you feel so inclined go here to read what some activists are doing about it.)
Messages from the Charlie Sheen incident that fan distrust of conventional medicines set us back years. (Not that mistrust of conventional medicine is confined to the HIV arena. Read this story about how distrust of medicine has fueled a TB crisis in Alabama, for example.)
Facebook is great for fostering community. It also plays a valuable role in getting treatment information out there - hopefully true but sometimes not.
I recently retreated in horror from one of those Facebook groups for people living with HIV – I won’t name it - because of the incredibly pervasive anti-treatment musings of fellow people living with HIV. Here’s what I was hearing . . .
HIV treatment is worse than HIV itself.
When to start treatment? It's best to wait until there is a patch, a spray or a cure.
The side effects of HIV drugs are horrendous.
I tried to interject, nicely, with a few comments about the START trial, about the side effect profiles of modern drugs and the ability to switch if one doesn’t seem to work out – but to no avail. Treatment denialists are not easily swayed from their beliefs, it became clear. So I left.
This belief set, of course, represents a challenge for those who believe in the science, or are charged with conveying it in as helpful a way as possible, but don’t wish to be seen to be too influencing treatment decisions when it's the patient’s undeniable right to make choices which he or she feels are best for them. Dumb or not.
Let’s talk treatment as prevention, discussion around which has not always been helpful to people living with HIV considering treatment. Those who work in the HIV movement have a history not of downplaying science and what we know about the risk of transmission but in being very, very cautious, loading the discourse with disclaimers, if ands and buts that have dissuaded some fully embracing advances in knowledge. Community activists, on the other hand, have largely been less cautious. Rightly or wrongly, they have tended to embrace advances in knowledge without waiting for the kind of conclusive proof that those who work in the field demand. The result? Mixed messages on the benefits of treatment.
Mixed messages are not good.
Perhaps the best example is The Swiss Statement from 2008 which was prescient in announcing the almost complete inability of someone on successful HIV treatment to transmit the virus. Of course the Swiss Statement was immediately attacked, including in Canada by many leading HIV organizations. (An example is here.) Much worse were suggestions from researchers, documented in a recent report, that the Swiss statement “should not be made public, because of the fear of risk compensation and/or behavioral disinhibition which would end up increasing HIV and sexually transmitted infection transmission risks”. If that sounds positively Machiavellian, so be it. (Bottom line? We don’t want people to stop using condoms. Forget freedom of choice. Forget people’s right to know. We don't care.)
In retrospect (and hindsight is 20/20) we fumbled that research – the above report makes that very clear - and arguably with HPTN 052 too, finally (sort of) seeing the light with PARTNER in 2015. Only then did those who work in the HIV community agree with community activists, scientists and other like minds who had been saying for years that successful treatment equates to effective HIV prevention. But what a tangled path to achieving consensus – and what damaging consequences!
Even now, although the science is pretty definitive, discussions about 'treatment as prevention' are so highly charged, at least in Canada, that the phrase is routinely avoided outside the province of British Columbia, home of its principal proponent, For example, treatment as prevention appears nowhere in Ontario’s HIV/AIDS Strategy's mission and goals. Instead they favour a continuum of care heavy on engagement. But - and here’s the rub – “engagement” is very different from treatment.
Why we endorse “engagement” – a stance which has human rights implications of its own – and pass on treatment recommendations - is a question I don’t know the answer to.
Meanwhile, we still discuss side effects in ways that don't reflect what can be expected from the more recently released HIV drugs. True, some of us have history; we know side effects well. (I certainly do.) Even today there will be some who experience side effects but their likelihood of occurring is well documented – and the numbers are comforting, And let’s not be swayed by hearsay. Charlie Sheen’s “poopy pants”, for example, could be caused by the meds, it’s true. But there are a host of other conditions, not to mention his erratic lifestyle, that could be the culprit.
Placebos, the ultimate benign pill, have side effects too, reported by those who are assigned to them in clinical trial stetting. Or so people think.
Here are some things that that might help to preserve a better balance between steering patients to the health solutions that are likely to work best for them, while maintaining their right to freedom of choice.
. Recognize that treatment decisions can be hard to make, need not be rushed but need a fairly comprehensive exchange of information that is hard for the newly diagnosed to process. Dumbing that information down in any way should be resisted. But if a person wants to start treatment the day they are diagnosed - and many apparently do - and if they are prepared, facilitate that process.
. Make sure that treatment information is accessible, up to date and as widely distributed as possible through a wide variety of media and that treatment literacy is a priotity for service providers.
. Some jurisdictions don't have treatment guidelines. Fix that please.
. Conduct research which helps us to better understand why people may be hesitant to take treatment, and the barriers they face.
. Recognize that the social determinants of heath influence all aspects of treatment; thus personalized solutions usually work better than across-the-board ones
- Actively monitor the potential for side effects, not just during clinical trials but through observational data bases that follow patient experience and outcomes over time.
. Use peers to help the newly diagnosed navigate the system, understand the pros and cons of treatment – and yes, offer advice from a personal perspective
. Consider how we can better incorporate recommendations into communications with those considering treatment, rather than just presenting the facts in a neutral manner. (Some (many?) doctors of course are already doing that and have done so long before the evidence was firm. Good for them.)
. Actively counter misinformation whenever and wherever it appears. It's OK, for example to call Charlie Sheen out. Bill Maher too.
. Always, always, always frame treatment decisions from both a medical and a human rights perspective.