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Changing My Mind on Treatment as Prevention

April 12, 2013

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Treatment Cascade: A Spotlight Series

Treatment Cascade: A Spotlight Series

This article first appeared on, Canada's Online HIV Magazine.

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 antiretroviral treatment (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 behavioral 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.

Bob Leahy

Bob Leahy

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 brought 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 annual general meeting 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, 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 important, 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 are 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 bottom 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 such as Atripla, 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. CATIE's James Wilton says:

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.

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This article was provided by TheBody.
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Reader Comments:

Comment by: Jack Motch (New York City) Sun., Sep. 28, 2014 at 11:04 am UTC
Hello, I have been HIV + for over 25 years with the last 7 being full blown AIDS by medical definition. I worked as a care giver in one of the first AIDS hospices in southern cal in 1989 in which they were giving massive doses of AZT and interferon to the patients. After watching them all die within 2 to 3 months of these medical treatments I concluded the drugs were more toxic than the disease its self and suspecting I was HIV + myself decided never to take any meds inless absolutely necessary, I was diagnosed in 1990 and first went on medications briefly in 2002 on a combo containing Kaletra which had awful side effects on me and I had a real crappy mormon doctor at the time so I discontinued the treatment until 2009 when I moved to NYC. By then my t-cell count was 9 and my viral load over 500,000 and I was rather sick to say the least so I started a cocktail with truvada, reyataz and novir which did well with me in terms of side effects and brought my t-cell levels to acceptable and my viral load to undetectable. But! I also know that these meds are very difficult on the kidneys and liver so about a year into treatment I decided to go on to half dosing in which oddly enough everything stayed the same even though my doctors and pharmaceutical companies that were profiting off these recomended dosages were adament in my so called compliance and even threatened to take me off the meds due to so called mutation factors. Fact is mutation occurs taking full dose or half dose as I have many long term surviving friends who have had to change the regimins once every 5 or so years due to the viral mutation produced by full dosing. The difference for me is my liver and kidney tests come back squeeky clean but my full dose friends have all sorts of complications. Fact is doctors and pharmaceutical companies are full of lies and I recomend holding off on any treatment until you really need it and don't be shy to ask questions and learn about your body. Organic foods are best!
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Comment by: Stuck in treatment (S.F. area) Thu., Sep. 4, 2014 at 9:38 pm UTC
Waiting until necessary is a great way to ruin a patient's health. With new drugs that are less toxic than the old drugs, patients can avoid becoming disabled because of the ravages of the disease and the treatment. Anyone that says wait, is frankly an idiot who should never be allowed to treat a patient.
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Comment by: Sunshine (Nairobi, Kenya) Wed., Sep. 18, 2013 at 4:41 am UTC
Insightful article. Just got diagnosed 3 weeks ago. My CD4 count is at 818. I was not given the option of starting meds immediately at all by my clinic (donor funded, so all meds and tests are provided free. I will only be put on meds if my CD4 drops to 350. Treatment as prevention is far from being a reality in my part of the world.
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Comment by: J (New York) Fri., May. 17, 2013 at 6:35 pm UTC
Although prevention is important my health is more important. I started treatment ASAP and I feel fantastic. Isn't there strong evidence and 14 people functionally cured because of early, very early treatment? I can't imagine with all that we know today why anyone would want to delay treatment?
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Comment by: Bob Leahy (Toronto) Tue., May. 21, 2013 at 2:26 pm UTC
There is plenty of evidence that early treatment is good for us, just like it is with many medical conditions. But if people want to jeopardize their health by delaying treatment, while needlessly maintaining high levels of potentially infectious virus in their body, that's their right, and I'll defend that, however unwise that decision seems to me.

Comment by: imstilljosh (Nashville, TN) Fri., May. 17, 2013 at 6:02 pm UTC

I admire your ability to so easily offer insight into your current views and as you already know, admire you personally, tremendously. Although, I am not with you 100% yet (if ever-- I am still attempting to get my hands around this entire debate), this is one of the first articles that I didn't immediately roll my eyes as I was exhausted from propaganda-like talking points almost handwritten, signed and delivered from a talented publicist retained by marketing directives of drugs. Instead, I trust you-- I trust your opinion and value your insight and wisdom; no matter on this one, our degrees of separation.

My best,
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Replies to this comment:
Comment by: Bob Leahy (Toronto) Tue., May. 21, 2013 at 2:18 pm UTC
Josh. I love you for this. Want to get married? :-)

Comment by: Lisa (Philadelphia, PA) Thu., May. 9, 2013 at 6:28 pm UTC
I love your take on empowering those people living with HIV as being able to put an end to the epidemic. Bottom line is that people don't like condoms and time and again will risk contraction/spreading HIV to avoid using them. (As someone previously in a serodisconcordant relationship, I know this first hand!) I am behind anything that is in addition to current strategies. And of course I always support an increase in options. :)
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Comment by: Bob Leahy (Toronto) Sun., May. 12, 2013 at 10:19 pm UTC
Thanks for your supportive comments, Lisa.

Comment by: Matt R. (Kansas City) Sun., Apr. 14, 2013 at 5:19 pm UTC
This is an article from Kansas City about hospitals refusing to treat HIV exposures with PEP.
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Comment by: Bob Leahy (Toronto) Sun., May. 12, 2013 at 10:20 pm UTC
Costly, but cost efficient . .

Comment by: Ken Warnock (Royal Oak, MI) Sun., Apr. 14, 2013 at 3:53 pm UTC

Thanks for your thoughtful insight into your evolution on early treatment of HIV. I was diagnosed HIV+ in 2002 along with AIDS and went on medications almost immediately. My first regimen was Combivir and Sustiva which I tolerated fairly well although the dreams were strange and I suffered GI issues and anemia and was constantly tired. I switched over to Truvada and Sustiva and then to Atripla. I am now on Truvada and Isentress because the efavirenz interacts with another med I am on. I have been a proponent of early treatment for at least a decade now. The studies have confirmed my belief that earlier treatment is better for multiple reasons as you have eloquently described! Keep up the great work!!
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Replies to this comment:
Comment by: Bob Leahy (Toronto) Mon., Apr. 29, 2013 at 4:55 pm UTC
Thank you so much!

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