Changing my mind on treatment as prevention
Editor Bob Leahy used to be a strong opponent of treatment as prevention and all it stood for. But times change and there has been a sea change in his view. Now he’s a treatment as prevention supporter. Find out what it was that changed his mind.
One hundred and eighty degree turns happen in a variety of ways. Sometimes we seize the steering wheel of our lives and in one fell swoop travel along an opposite path. Other times, we take the turn slowly, one degree at a time, gradually realizing the path we are on leads nowhere and we need to go off in radically new directions. That’s been the case with my realizing that most of my once fervently held objections to treatment as prevention, in 2013, make much less sense than they once did.
Why? In the last decade, our knowledge of disease progression has changed as has how much we know about the impact of ART on our ability to transmit the virus. But treatments have changed too, and so has my own willingness to look at both sides of the argument, to weigh them against each other and to make informed choices which recognize, above all, a shifting environment.
As well, the realist in me tells me that when it comes to HIV prevention, the status quo isn’t working. I respect those who work in the prevention community. But, to be blunt, those who continue to play with the same old tricks – plugging condom use when we know the limits to their efficacy in real life situations, trying to effect behavioural change with the odd stray missile thrown at the social determinants of health - are playing in the wrong sandbox. Let’s not fool ourselves. None of these things will stop the epidemic. We need new tools.
Enter my new friend, treatment as prevention.
Accepting it as a valid, in fact necessary, tool hasn’t been a slam dunk. My early introduction to it left me decidedly unimpressed. At the Canadian AIDS Society (CAS) eight years ago I echoed the concerns of the Quebec caucus who first bought the issue of treatment as prevention to the floor, concerned at the notion of people being put on treatment without informed consent and with no demonstrable benefit to their health. If memory serves me I moved a motion that was approved at a CAS AGM condemning treatment as prevention - and in fact was instrumental in drafting a highly critical position paper when I was subsequently elected to the CAS board.
Fast forward a few years. I was still a treatment as prevention doubter in January 2012 when, through my work for PositiveLite.com, I nervously picked up the phone to talk with Dr Julio Montaner, the distinguished former head of the International AIDS Society, now heading the British Columbia Centre for Excellence in HIV/AIDS. Montaner is of course a leading expert on, and advocate for, treatment as prevention. His arguments though, have not persuaded all in the HIV/AIDS movement, notably many people living with HIV/AIDS.
Going in to that long conversation with Montaner, which you can read in two parts here and here I had real reservations as to whether treatment as prevention was ethical or even good for people living with HIV, yet alone effective. I’ll get to how I’ve processed those issues since, but let me first say a few words about Montaner.
As I said in my interview, he‘s a passionate man. One to one, he speaks with excitement born of frustration. But the thing that impressed me most was how so much of our conversation was rooted in his obvious burning sense of justice, of civil rights, of the conviction he has of what is the right thing to do. Far from down treading on patients’ rights, for instance, he was vocal and insistent about the need for informed consent and hugely concerned about disparities in access to treatment and care.
He’s also very persuasive, both in his manner and in his arguments. More of that later.
In any event, I wanted to look at the commonly used arguments against treatment as prevention, ones which I once upheld, and share why there has been a shift in my appraisal of them since those early days at CAS. Beginning with . . .
1.Let’s not start treatment earlier than we absolutely have to . . .
There is an oft expressed concern, or was, that HIV treatments are toxic. If this is true, why expose the body to HIV meds longer than necessary? Montaner makes the point that while not perfect, treatments have improved considerably. More importantly, he suggests most everybody will need to start treatment sooner or later; delaying a few years until the immune system is showing signs of collapse results in a only a few year's respite from meds out of what will almost certainly be many decades of treatment. Blunt words, but I found that argument quite persuasive.
2. There is no demonstrable benefit to the patient to starting treatment early.
There was always the belief, now the certainty since HPTN052 (CATIE dubbed it “the trial that changed everything”), that antiretrovirals could have a marked impact in reducing one’s ability to transmit the virus. Experts now believe that benefit can, in the right circumstances, be as effective as condom use. That’s powerful. But whether there any other benefits has been a thorny subject. The evidence now seems to firmly suggest there are. The negative impact of inflammation, for instance, even when CD4 counts are holding strong, has been well documented. As CATIE’s James Wilton said to me in a recent interview . . .
“More and more research is showing that even early on in the course of HIV infection the virus can begin to cause long-lasting and permanent changes to certain organs and the way the immune system works. Research is also showing that uncontrolled HIV replication causes ongoing inflammation which may lead to premature aging of the immune system and accelerated development of age-related conditions such as cardiovascular disease.”
The botton line? Others may, but I’m not prepared to ignore the evidence that, simply put, starting treatment early really is better for us.
3. But what about side effects if I have to start treatment now?
When I started advocating against treatment as prevention at CAS, going on treatment was full of problems for many. It's way less problematic now. In fact many who’ve started on one-pill-a-day treatments like Truvada, a particularly well tolerated medication, will answer “what side effects?” But the fact is if you are going to experience them, and I hope you won't, that’s not likely to change whether you start treatment now or later.
4. But what about long term side effects? Those treatments may look safe now, but side effects can often emerge over the longer term. Why encounter that prospect earlier than you might need to.
This is a variation on 1. above and for many years, I felt it to be a very persuasive argument. After all I suffer from both lipodystrophy and peripheral neuropathy, the latter very badly, consequences of talking medications whose latent side effects came as a surprise to all. So yes, I know side effects can happen downstream. But this argument is not so much an argument against treatment as prevention as treatment in general. So while I don’t discount this argument entirely, I’ve learned to put my faith in the fact that modern day meds are better than those that have caused myself and others grief in the past. And, you know, sometimes, as throughout the history of HIV treatment, we just have to take a chance, recognizing that few things in life are certain.
5. People are going to be given treatment against their will because someone decides it's best for them.
First of all, suggesting treatment be offered for a condition not long after diagnosis is hardly exclusive to HIV – think cancer – and there are always dangers inherent in this process. Informed consent is the issue as is the opportunity for coercion. It’s tricky to ensure informed consent happens always, but certainly not insurmountable – and that’s where we can and must do the work. Says CATIE’s James Wilton . . .
“It’s important that people living with HIV have constructive and meaningful discussions with their healthcare provider before they make the decision to start treatment. These discussions need to explore their readiness to start treatment, the risks and benefits of initiating treatment and what the evidence does, and does not, tell us. Ultimately the decision needs to rest with the person living with HIV. The tools we need are those that support the doctor-patient relationship to ensure informed decision-making and treatment readiness. CATIE has developed several of these tools, such as an HIV treatment talking tool (Your Doc Talk), treatment videos (Starting HIV treatment: Personal Stories), A Practical Guide to HIV Drug Treatment, and workshops. Some of these tools are available at http://www.catie.ca/en/starting-treatment.”
6. It’s unethical to put public health interests ahead of patient interests by promoting the need to get viral load down at the population level.
First of all, I love that there is an ethical component to this debate; more on that later. But I wouldn’t deny there is certainly meat in the above argument. PositiveLite.com writer Ken Monteith recently said .
“I do believe that a person can validly choose to embark on treatment early, but not in a context where the background information is being manipulated for another purpose. Treatment guidelines are supposed to be about the health of the person being treated, not a pharmaceutical control of that person's sexuality.”
He’s right of course. We need to be vigilant that that doesn’t happen. Certainly treatment as prevention advocates, including Montaner in particular, stress that the decision when to start treatment has dual benefits – better clinical outcomes and reduced ability to pass on the virus to others. We need to make sure, though, that the health of the individual is paramount. I believe we as a community are up to that task.
And finally . . .7.Treatment as prevention doesn’t work.
Sure it does at the individual level. On that the verdict is in. But at the population level? Certainly San Francisco, the province of British Columbia and some locales in Africa have claimed success in the form of reducing numbers of new infections. The problem is that treatment as prevention, on a population basis, doesn’t seem to be working in gay men.
There has been much debate about why, some of it anatomically based and frankly, in this writer’s opinion, bordering on the ridiculous. The saner consensus that seems to have emerged, though, is that because MSM infection rates are already very high, including in the untested, existing treatment coverage (just 28% in the States, with a similar figure estimated for Canada) testing/early treatment at existing levels is just not enough to bring infection rates down. I buy that, which is why I also buy in to the concept of moving people, wherever possible, along the treatment cascade, a cycle which encompasses detection through to viral suppression that’s outlined here, as handily as we can.
When it comes to MSM, it’s interesting that only some of the more progressive gay men’s sexual health initiatives have really bought in to the concept of treatment as prevention. ACON, for instance, out of New South Wales, is a leader in promoting both testing and early treatment with an aggressive (some will say overly aggressive) target of getting 90% of gay men on treatment. The language may be too strong for some but it’s beginning to look like these sorts of high levels are necessary to end the epidemic. Certainly this is what the Brits are saying too.
Other organizations, particularly in Canada, are less than enthusiastic. There is, for instance, a position paper from the Toronto PWA Foundation from 2010 that you can read here which is complete as to all possible objections to treatment as prevention, but which provides less attention to its benefits. I would like to have seen more balance here.
And there is the rub, isn’t it? Deciding whether new technologies like treatment as prevention including PrEP - even home testing - are to be supported involves weighing the pros and cons, not looking merely at one side of the scale. And in the changing environment in which we live, I’ve come to believe that in the last year or two the scales have been tipped in favour of looking at treatment as prevention, both at the individual and populations levels, as something to be embraced.
Many have made the point, though, that treatment as prevention needs to work in tandem with other prevention technologies, and condoms in particular. They are right, of course. Let’s not go overboard here. HIV-negative people in particular need to be encouraged to use them. Positive folks who are undetectable? The verdict is still out, but I’ll wager that it will come to pass that it’s not just between heterosexual discordant couples where one is undetectable that the chances of transmitting the virus are close to zero.
In any event, you know where I stand now. Know too that in Ontario it sometimes feels lonely to be a proponent of treatment as prevention, but I’m OK with that. Besides, group think has never been a virtue I’ve bought in to.
One final argument for treatment as prevention I’ll throw in, and it’s an ethical one we seldom hear because – well. we seldom talk ethics. But here’s the thing. Our community has had an amazing record of grappling with the epidemic from within. That’s because we care for each other. We understand community. So we promoted condom use, for instance, when condoms were just a birth control device, even when we didn't like them. We created an amazing community-based health infrastructure that has become a model for others. Now we have a chance to end the epidemic – again from within. And people living with HIV now have the power to make that happen.
As I said earlier, it’s become patently clear that existing prevention strategies aren’t cutting it, unless you call containing the epidemic, some of the time, a success. I don’t. For the first time in years, there is a pathway to perhaps end the epidemic but it involves, amongst other things, people living with HIV actively participating. That strikes me as a huge opportunity rather than a threat.
I for one would love to see us seize that opportunity. Why? Many reasons, as you'll see above, but on top of all these - and here comes that ethical thing again - is that I now believe it’s the right thing to do. That's not so strange, is it?
So what do you think is the right thing to do?