21 July 2011

Statements as Pretension (SASP)

So the big 'news' coming out of the IAS meeting in Rome has been all about Treatment as Prevention. I have some problems with this public health approach that I want to explore with you (or rant into the ether at any rate). I'm not going to pretend that I'm doing something scientific here, or even thorough — I'll leave that for work. I just want to articulate my own concerns.

The other thing I don't want anyone to come away thinking is that I am questioning in any way the effectiveness of anti-retroviral medications in reducing (even reversing, to some extent) the impact of HIV on people living with the infection or reducing their infectiousness with respect to their partners. I'm totally on board with that and wouldn't be on board with anything if it were not for these drugs and their predecessors. I would be dead.

The supposed 'failure' of prevention. This is the first thing that really gets my goat. Can we say that prevention has failed when within a generation the community of gay men has gone from zero condom usage (pre-HIV) to rather consistent 75% condom usage (check the various studies and then try to find one about condom usage among heterosexuals)? Imagine what might be possible if there were actually adequate investment in prevention with gay men and other men who have sex with men.

Can we say that prevention has failed when the infection rate among injection drug users has gone down or at least stabilized (projecting from statistics on new diagnoses)? Imagine what we would be able to do if we had the resources, policies and capacity to distribute a truly adequate number of syringes, including in prisons and in places that make injection less harmful than it is in a back alley?

And my last comment on this: are these people pronouncing the 'failure' of treatment when people die despite their HIV treatments (or because of their long-term side-effects)? Of course not. I would hate to think where we would be without the level of prevention (classic approach) that we have had, and dream of how much more we could do with adequate resources.

Treat me, remove all trace of your responsibility. Since when did it become my exclusive responsibility to protect you from HIV infection? What about the shared responsibility that our public health authorities have been talking about since HIV/AIDS first reared its head in the 1980s? I am perfectly willing to assume my responsibility to prevent the transmission of HIV, including protecting others from the virus within me. But this doesn't belong to me alone. How many times can I be expected to insist on condom-only penetration when, after disclosing my status to a partner, he attempts condomless sex several times? Where's his responsibility in this?

I take these treatments for my own health, not yours. If you get some secondary benefit from my adherence to effective treatment, then bonus for all of us. Just don't expect me to put your interests ahead of my own and embark on a lifetime of treatment before the treatment guidelines indicate its necessity for controlling the impacts of HIV on me. Don't go messing with those guidelines, either, by looking at anything other than my interests. This is a form of chemotherapy that is not without effects (if it were completely innocuous, it wouldn't be working on the HIV), so I won't be taking it for the purpose of relieving you of the burden of putting on a condom or adapting your sexual practices to protect yourself.

The new drugs have minimized the side effects. Where (or when) have I heard that before? Late 1990s, 'Hit Hard, Hit Early'? Have we learned anything from that time? Have the public health authorities done anything to repair the damage that approach did to many through lipodystrophy? No. So now you expect us all to endorse putting people on treatments that are relatively new for the rest of their lives (since research shows there can be negative health impacts of stopping treatment, even when you started it earlier than the guidelines would recommend)? Will you promise to investigate and repair any damage this might do? Didn't think so. How about taking them yourselves for the rest of your lives? No? Quelle surprise.

Seek, test and treat. In a context where an estimated 27% of HIV-infected individuals don't know they are infected, it makes a lot of sense to offer testing in new and innovative ways to reach those who are not being reached. Offer, not impose. In Canada, we impose testing on immigrants and refugees, and I think that is a horrible mark on our reputation as a country. But think about the injection drug users in the Downtown Eastside of Vancouver: have they the power to refuse to be tested if they don't want it? Are they being provided with all the information they need to make that decision for themselves? If they test positive for HIV, are they being rushed into treatment, or being offered information and [unbiased] support to make that decision for themselves? I remember that feeling of toxicity that followed my diagnosis. That is not the time to make an irrevocable decision to be treated earlier than indicated by the treatment guidelines.

Acquiescence is not enough; it takes informed consent.

And what else are we doing to make testing more accessible? Have you noticed that question on an insurance application about whether or not you have been tested for HIV in the past? A yes will get you another questionnaire and the very real possibility that you will be deemed too much of a risk, all for having followed the advice of public health to get tested. We need to make that question illegal if we want to remove all the barriers to testing.

Criminalization and discrimination. Ever notice the zeal with which our police and prosecutors pursue the evil PHAs who might have exposed their 'victims' [tango partners] to a risk of HIV transmission without disclosing their status (or without being able to prove that disclosure)? Leave aside the fact that many of them have knowledge of HIV that dates from the early 1980s and not beyond and ask where are the public health authorities and the weight of their pronouncements? You can't trumpet the necessity of treating everyone with HIV all the time to put an end to this pandemic and then slink away and refuse to insist on the same level of lack of risk in the context of these prosecutions. We're getting the burden of your policies and none of the benefit.

Where is your zeal in investigating and prosecuting the breaches in confidentiality, the illegal dismissals, the denials of hiring, services, housing…? Show me that zeal and I'll be happy to endorse everyone knowing and disclosing their HIV status.

The cynical me is waiting for the case of someone being accused of criminal negligence for not embarking on a treatment regime, or not taking it properly. Court-ordered treatment? It has happened elsewhere in the world for HIV. But we require treatment for infectious TB, you say? There's a little difference between the method of transmitting tuberculosis and that of transmitting HIV that you ought to be considering if you think compulsory treatment might be in the cards. Again, this is 'treat me, erase your own responsibility' and I won't accept the whole burden.

Treat everyone? There's a basic problem with taking this approach today: we haven't even succeeded in treating the people who need it for their own health, let alone those who might 'need' it to protect yours. Tell the people in developing countries, tell the people on the ADAP waiting lists in the United States, that the drug supply has been reallocated to treat everyone with HIV in wealthy countries (where the prices are better for sellers) before they need it to survive, all in the interest of preventing the uninfected from having to think about how to prevent themselves from becoming infected. Seems a little shallow and hollow, no?

So yes, treating people with HIV does work to reduce infectiousness and transmission and would surely help us to eradicate this serious public health problem. But there are a few other problems that we need to solve first if we want this to work.

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