AIDS and Medical Aid in Dying - are there lessons to be learned?

Canadians debate currently where to draw the line in the sand in terms of eligibility criteria for medical aid in dying. The federal government is determined to push thru a bill that is uncontroversially unconstitutional by limiting access to terminally ill patients.

Today the Globe and Mail (a paper that supports our government's restrictive approach to medical aid in dying) published an unusually thoughtful commentary by Konrad Yakabuski in support (you won't be surprised to hear) of said restrictive approach.

Yakabuski and I have something in common, something important. We both lived thru the early years of the HIV/AIDS epidemic, we both lost loved ones to the disease. Yakabuski mentions that his brother and several friends of his died of the ravages of AIDS, 'with dignity, the old-fashioned way'. Yakakuski's main point (a very reasonable point) is that eventually treatments for HIV infection came about that permit HIV infected individuals today to live basically healthy lives. If medical aid in dying would have been available to them, some HIV infected patients may have chosen to end their lives prematurely, however, if they had decided to stick it out, they might have been able to hang on for long enough to benefit from the life preserving drug regimes that exist today. He then makes the same claim about anti-depressants (arguably he is terribly mistaken on that frontier, but that's unimportant for the purpose of his broader point, it doesn't rely on him being right on that count).

Well, I'm a gay man who has seen very many of his friends succumb to HIV infection in the same years that Yakabuski writes about, and I disagree entirely with his argument and his policy recommendations. You won't be able to see this response in the Globe and Mail, unfortunately, because the paper has been reduced to a propaganda vehicle for a restrictive assisted dying regime.

There has been some debate both among medical ethics people, but certainly also among HIV infected people about medical aid in dying, in the 1980s. One leading bioethics journal, the Hastings Center Report, published many years back a piece by my friend, the late Michael Callen, entitled 'If I have AIDS, then let me die now.' Michael had, of course, no intention whatsoever, to die on AIDS. In fact, years after he published his commentary he wrote a book called Surviving AIDS. Eventually he succumbed to the disease, shortly before life-preserving treatment regimes came onto the market. I have lost far too many friends like Michael.

But I digress, let's return to Yakabuski's commentary. Why would educated AIDS activists, like Michael, have written a commentary for a mainstream medical ethics journal in which they argued that they should be able to receive medical aid in dying when they thought their time had come? Simply put, it was about self-determination. Something maligned by Canadian anti-choice activists as 'autonomy fundamentalism' (not Yakabuski's words!). It was a choice for Michael to make for himself, not for me, not for government, it was his call to make.

The problem with timelines in this context is that we can never know whether, if at all, and when a successful treatment for a particular ailment comes onto the market. Yakabuski briefly mentions the horrible deterioration in health and quality of life HIV infected people in those days experienced. It was worse than that, they had seen friends and lovers wither away, they knew what was coming their way. It's all nice and well to describe this withering away as 'dignified and old-fashioned', but frankly, for many of these young people who died during those years there was nothing dignified about their dying, and no amount of hand-holding and caring would have made their disintegrating lives any more dignified. I am deeply troubled about the euphemisms Yakabuski deploys to describe what was actually happening in our community. I also have no doubt that that is how he subjectively experienced or remembers his brother's death. It is not an experience that is representative of how dying of HIV was experienced by many, if not most, of those who died in those years.

The question then, surely, is whether these patients were entitled to call it a day when they decided they had enough, or whether the state had any right (as the Liberal government's legislation proposes) to force them to stick around and deny them access to medical aid in dying on the ground that some drug might come about. My answer: Of course they were entitled to make those choices and see those choices respected and supported. That the state would think it has a role to play in forcing such patients to stick around no matter what, or commit suicide by some gruesome means, is just mind boggling.

HIV is different to depression, of course, in that it was actually an illness where death would have been reasonably foreseeable, so HIV patients arguably would have met the standard set out in the restrictive government draft legislation of bill C14.

I have published a year ago with Suzanne van de Vathorst a lengthy piece on treatment resistant depression and medical aid in dying. May be take a minute or two to read it. It's available here. The same link will also take you to published responses, including one or two making Yakabuski's case, as well as our considered response to those arguments. The article also supplies hard data on the actual large scale failure of available treatment modalities that Yakabuski glosses over in his piece. The argument here is the same as above, if a patient is competent at the time of decision-making and he or she does not consider their lives worth living, and available treatment options have been exhausted, we as a society have no right whatsoever to force such people to stick around in the hope that some treatment might come about during their lifetime. It's a decision only such patients can make for themselves. Whatever they decide, they deserve our support.

Globe and Mail misleads about HIV/AIDS legal basics and vaccine research

Hmm, the Globe and Mail newspaper, Canada's only paper that comes reasonably close to being a national quality outlet, decided to contribute to today's World AIDS Day by offering a list of nine things we should know about HIV.  Good idea, questionable execution.

Under point five the paper informs us in the subheading going with point five (out of nine)

'5. In Canada, it’s is illegal for HIV-positive people to have sex without disclosing their status.'

Except... it isn't actually illegal for HIV-positive people to have sex without disclosing their status. As the journalist responsible for the list notes in the paragraph right under the subheading,
'A more recent Supreme Court ruling stated that a person living with HIV does not have to disclose their status before having vaginal sex if a condom is used and the person has a low viral load.'

That's actually the case. Canadians who happen to be HIV-positive, have an undetectable viral load and use condom during sexual intercourse are not under a legal obligation to disclose their HIV-status to their sex partners.

Important lesson. Make sure to scan more than just the subheadings of the Globe and Mail.

The journalist writing up the nine point list of random 'facts' made up another 'fact' altogether:

'8. The first and only preventative HIV vaccine is being developed in Ontario, but it still has a way to go.'

Reality check:  lots of preventative vaccine candidates are being tested in clinical trials. They pretty much all flamed out to date without doing much. The Globe and Mail journalist responsible for the nine point list links this particular 'fact' to a 2013 article in a business paper alerting readers to the fact that a team at Western University succeeded in testing their vaccine candidate in a phase 1 clinical trial. Phase 1 clinical trials only test for toxicity, no more. So, the long and short of it is that nothing much is being 'developed' on the preventative vaccine front in Ontario. Here's the Globe and Mail take on this: 'Preliminary clinical trial results appear positive but there are still many hurdles to overcome, including manufacturing and regulatory approval.' That's a funny way of looking at a vaccine candidate that has - according to the report the Globe and Mail article uses as reference - barely emanated from phase 1. If you think that manufacturing and regulatory approval are the relevant hurdles to take when it hasn't been established that the agent actually works as a preventative agent, you might want to reconsider your investment strategies as far as pharmaceutical companies are concerned.

This hyping of clinical research in the absence of firm evidence seems to become standard journalistic operating procedure in this country, ever since experimental agents were randomly promoted to Ebola vaccines by eager journalists across the country.

Check out the Globe and Mail piece, some of the other 'facts' seems suspicious, too, but I don't have the time to fact-check this particular list of 'facts' in detail.

In Saskatchewan, where the prevalence rate is three times the national average, a person is infected even more frequently.. A person is infected with HIV in Canada every three hours.

In Saskatchewan, where the prevalence rate is three times the national average, a person is infected even more frequently.

Grinding my gears - Truvada marketing

I don't know whether you watch Family Guy, but if you do you will recall Peter going on to become a minor TV celebrity in an episode where he goes on rants about whatever it is that's grinding his gears, as he puts it so succinctly.

Take this commentary in that spirit - I may have missed relevant information (aka Peter …). I know that HIV prevention/Tx folks check on this blog every now and then. Consider yourselves invited to enlighten me if I missed a beat.

So, Truvada marketing by WHO and other assorted HIV prevention folks is grinding my gears in a big way these days. WHO reportedly advises that sexually active HIV negative gay men in sero-discordant relationships should go on Truvada. What grinds my gears is that to date there is not a single documented case of HIV transmission from an HIV positive guy on HAART whose viral load is undetectable, courtesy of that medication, to his sex partner. For the sake of the argument, assume that there are in fact a (very) small number of such transmissions happening. How can that be a good reason for advising every HIV negative gay man in such a relationship to initiate a regime of - frankly - fairly toxic drugs for ever (i.e. while he is sexually active)? Unlike Gilead's information on its Truvada website, the UK NHS provides a clearer picture of what you HIV negative gay guys can expect if you choose to join the Truvada train. These ain't sugar pills.

What grinds my gears it that we have zero clinical evidence that folks who take Truvada prophylactically, and say, successfully, throughout their sexually active lives, fare any better than those who wait with going on HAART until they sero-convert. What one would want to know, obviously, is whether folks who wait for a possible infection and then get treated, fare any worse in terms of mortality/morbidity than those who have boarded the Truvada train at gigantic cost to the health care system or their insurance company or to themselves. The truth is, we don't know that. This hasn't stopped WHO from marketing Truvada busily on behalf of Gilead, the drug's manufacturer.

Some have argued that folks would typically only need to use Truvada for a few weeks prior to an unsafe sexual encounter and then possibly use post-exposure prophylaxis afterwards. So, the argument continues, they'd be better off than those who'd sero-convert and have to take HAART for the rest of their biological lives. I'm sure Gilead's sales executives quietly laugh at this logic, because none of us plan for an unsafe sexual encounter (you know, in the real world nobody will say, hey, I'm going to have unsafe sex in six weeks time, lemme go on Truvada now, when unsafe sex done, I'll stop it again - sex doesn't quite work like that). In any case, post-exposure prophylaxis works in around 92-95% of cases, so why not stick to such a regime if you had unsafe sex with someone who's HIV positive and doesn't have an undetectable viral load.

Now, this was what I consider the strongest rationale for advising sexually active men to go on Truvada as a means of HIV prevention. Apparently, WHO hasn't quite left it there and went all out, it recommends that all 'men who have sex with men consider taking antiretroviral medicines as an additional method of preventing HIV infection'. This quote is from WHO's own press statement on the release of its report.

Talking about grinding my gears, this definitely does. For starters, the majority of sexually active gay men do not become HIV infected. And yet, WHO thinks they all should go permanently on highly expensive  - prices admittedly vary, in Canada they're at 1100 $ p/month, in South Africa at a more palatable 9$/month - and fairly toxic drugs. At this point in time we do not even know what the impact on their health would be 20 years down the track. As mentioned earlier, even for those who might become infected we do not know whether they might not be better off beginning treatment after they got infected than using comparable drugs throughout their lives to prevent an infection.

Let me cut thru the chase here: If WHO was an honest organization, it would concede that the only sound motive for advising all sexually active gay men to begin taking Truvada is a public health rationale, and not the health of those who take those drugs. Incidentally, that makes sense, WHO does mostly public health stuff anyway. If all or most sexually active gay men would take Truvada, we'd probably be able to get rid of the bug over a generation or two. This would come at a medium to potentially high price paid by the majority of gay men who would take this drug even though they'd not have caught the bug anyway.

That being said, I'm not trying to persuade anyone not to go on Truvada, I don't know whether it's a good or a bad idea, what grinds my gears is that in the absence of crucial clinical questions being settled, sweeping recommendations are made by WHO with a view to putting perfectly healthy gay men throughout their sexually active lives on seriously heavy medication with a side-effects list as long as your weekend shopping list. This is dangerous, because the absence of vital clinical evidence suggests there ought not to be consensus advice of this sort.

I can't wait for NICE to step in here and call this nonsense for what it is, a marketing exercise.

HIV Health Promotion Ethics and Pre-Exposure Prophylaxis

A lot has changed since the early days of HIV/AIDS. In the not so good old days an HIV infection pretty much constituted the end of the road for those infected. Most infected people died of one or another infection a healthy immune system would have been able to cope with. The public health messaging at the time was unequivocal: protect yourself and others by using condoms every time you have sex with someone whose HIV status is unknown to you. The ethical rationale for this was predicated on ideas such as Dan Beauchamp’s. He wrote, ‘public health should advocate a counter-ethics for protecting the public’s health, one articulated in a different tradition of justice and one designed to give the highest priority to minimizing death and disability.’[1] Libertarians such as the gay philosopher Richard D. Mohr didn’t buy into this story, questioning even whether the idea of ‘public health’ was intelligible to begin with.[2] He wasn’t the only critic of public health promotion campaigns. Patricia Illingworth warned more than two decades ago that AIDS health promotion campaigns could be hazardous to our autonomy.[3] She argued, persuasively to my mind, that many health promotion campaigns are manipulative and so they undermine autonomous decision-making by competent adults.

I cannot help but wonder whether we have come full-circle on this issue. Today we have medicines available that effectively control HIV. AIDS is so rendered a chronic manageable illness. These medicines have a truly remarkable side-effect. They are capable of rendering people with HIV infection, who take them, non-infectious for all practical intent and purposes.[4] Indeed, medication has come on the market offering something called pre-exposure prophylaxis. The idea here is basically that perfectly healthy people with a fairly high risk of contracting HIV take this medication to prevent the virus from taking hold in case they get exposed to it.

There are all sorts of ethical issues that arise in the context of the proposition that healthy people should take drugs to prevent a future infection that might never happen to them in the first place, at a cost of thousands of dollars per year per non-patient. Still, epidemiological modeling suggests that this strategy could end the HIV pandemic in a generation or two. You can see why: If infected people take drugs that render them non-infectious and everyone at high risk for contracting the virus took the same class of drugs as a prophylactic against an infection, eventually new infections would decrease very significantly. In the absence of a preventive vaccine this might be our best shot at beating the virus.

The courts have not quite caught up with this new reality. HIV infected individuals with undetectable viral load, who have unsafe sex without telling their partners, still risk prosecution in many countries. But what about the public health promotion industrial complex’s response? Has it modified its campaigning on the issue? It turns out, the strongest condemnation of pre-exposure prophylaxis came from public health promotion people. They were primarily concerned that people in groups at high risk for HIV infection might take the medication and engage in unsafe sex.  There is a mindset at work that we might be better off threatening people with HIV sufficiently to scare them into having safe sex. Telling them the truth and risking that some might decide to take drugs efficiently protecting them against HIV in order to engage in unsafe sex doesn’t seem an option. Why would otherwise sensible people hold such views?  Well, they are concerned that a rise in unsafe sex could lead to people acquiring other sexually transmissible illnesses.[5] 
Even if that was true, surely any health care system ought to strive toward reducing the number of people with a serious infection such as HIV even if that meant accepting a higher number of people with mostly treatable infections such as syphilis, gonorrhea and the like. Bizarrely the suggestion has also been made that if gay men stopped using condoms courtesy of the risk-reduction the pre-exposure prophylaxis affords them, they would eventually be as sloppy with the medication itself.  It goes without saying that there is zero evidence to support this contention. As to the increased risk-taking alluded to a moment ago, available research suggests that pre-exposure prophylaxis goes hand-in-hand with only a slight increase in the likelihood of reduced condom use    .[6]

There’s also the usual rhetoric of ‘reckless’ behavior, which ignores that a decision to have unsafe sex can be a carefully considered choice. It is not that safe sex is a cost neutral activity. Surely there is a reason for why most people do not use condoms consistently.[7] Patricia Illingworth wrote an illuminating monograph defending the right of gay men and others to make such choices.[8]  

It seems Illingworth and Mohr had a point when they warned about the capacity of public health promotion activities to harm individual autonomy. To campaign against HIV pre-exposure prophylaxis in order to ensure that gay men don’t make safe sex related choices health promotion people disagree with seems ethically deeply problematic. Their task would surely be to persuade potentially risk taking people not do do so by outlining what risks, other than HIV, they would run if they did what they are contemplating doing. To use the threat of an HIV infection as a means to achieve other objectives, namely to reduce the incidence of other sexually transmitted illnesses, is a non-starter.

UDO SCHUKLENK

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[1] As quoted in Patricia Illingworth. 1990. AIDS and the Good Society. London: Routledge, p. 48.

[2] Richard D. Mohr. 1987. AIDS, Gays and State Coercion. Bioethics 1(1): 35-50.

[3] Patricia Illingworth. 1991. Warning: AIDS Health Promotion Programs May Be Hazardous to Your Autonomy. In: Christine Overall and William P. Zion. (eds). Perspectives on AIDS: Ethical and Social Issues. Toronto: Oxford University Press, pp. 138-154.

[4] Gus Cairns. 2014. No-one with an undetectable viral load, gay or heterosexual, transmits HIV in first two years of PARTNER study. March 04. http://www.aidsmap.com/No-one-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNER-study/page/2832748 [accessed March 05, 2014]

[5] For a bioethical version of this concern see Richard M. Weinmeyer. 2014. Truvada no substitute for responsible sex. February 14 .Bioethics Forum http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=6777&blogid=140 [Accessed March 04, 2014]
[6] Martin Holt, Dean A. Murphy, Denton Callander et al. 2012. Willingness to use HIV pre-exposure prophylaxis and the likelihood of decreased condom use are both associated with unprotected anal intercourse and the perceived likelihood of becoming HIV positive among Australian gay and bisexual men. Sexually Transmitted Infections 88: 258-263.

[7] L.A. Scott-Sheldon, K.L. Marsh, B.T. Johnson and D.E. Glasford. 2006. Condoms + pleasure = safer sex? A missing addend in the safer sex message. AIDS Care 18:750-4

[8] Patricia Illingworth. 1990. AIDS and the Good Society. London: Routledge