This summer, I was invited to participate in a conference on HIV as part of a panel with the theme “What if I don’t want a fucking cure?” I accepted, but I really had to do some mental gymnastics to wrap my head around the topic. After all, haven’t we all been chasing a cure since we first discovered this virus ravaging our communities…and the planet?
I ended up reflecting on reasons I personally might refuse a cure offered to me.
As one of the audience members pointed out in the exchanges that followed the three panelists’ presentations, there was something underlying our respective reactions to the question that we really needed to acknowledge: we were all three white gay men in a resource rich country. No dependents, no responsibility for anyone other than ourselves, no obvious expectations of child rearing. Those things can colour one’s response to such a question.
I decided to explore the reasons I might refuse a cure if it were offered to me, counting on myself to be be principled by more than self-interest. I organized them into three levels of rejection.
My life has been disrupted once by the change that came with my diagnosis. I spent a lot of time adjusting my expectations of myself and my future, and I am better off for the self-reflection that I went through. I have so often heard people talking about how getting HIV was such a good thing for them — in terms of this re-assessment of values and priorities — and I am not the exception to that rule, as bad as that sounds as a prevention message. Well, it isn’t a prevention message; it is an affirmation of having made a silk purse out of a sow’s ear, and being rather pleased with the result.
A cure now? I’m not sure that I want to go back to my workroom and fire up the sewing machine to see what I might make of that, of not being HIV-positive when I thought I always would be. I have come to realize, more than 15 years after my diagnosis (itself rather late) that being HIV-positive has worked its way into my identity. That must be why my first instinct when I hear people talking about “ending AIDS” is to feel threatened, before getting a grip and realizing that we are talking about ending the epidemic and not ending me.
Global Political Level
Ever since effective treatment has been on the scene in HIV, the world has struggled to make it available to all of those who need it. Well, at least they have been seen to struggle to make it available. Some of these efforts have paid off, and more and more people are getting treatment, often through the generosity of donors, be they individuals or nations. We’re not all the way there: many people in sub-Saharan Africa (to use one example) do not get access to medications when they need them. Second-line treatments are still illusory in many of these places. It’s a bit of a joke, in this context, that the World Health Organization treatment guidelines for these developing countries now recommend earlier treatment, considering that we are still not managing to treat everyone who would qualify under the old guidelines.
This is one reason I would find it personally difficult to travel to developing countries faced with this situation. My well-developed sense of guilt would make travelling with my second-generation HIV meds in places that can only aspire to them almost unbearable. If we add to that a little fear of losing my meds along the way and not being able to replace them before developing a resistance, we get to unbearable. It’s a little precious of me to avoid some countries so as not to be overcome by my own guilt — like if I don’t see it, it isn’t happening — but I have considered that my not taking meds here wouldn’t do anyone else any good, and I don’t need to travel the world flaunting my good fortune.
So, a cure in this context? I fear that a cure would be available here and not everywhere. That, as usual, the privileged of this world would get it and the less privileged would die. In a context where I am living in relative health with my HIV treatments, I could politically refuse a cure here until it is available everywhere, and my refusal would cost here, not there.
Political Economic Level
In our current economic system, there are some notable players reaping huge rewards from the treatment of HIV. We call them pharmaceutical companies, and while they are populated with people who genuinely care about the welfare of others, they are corporations whose purpose is to maximize their profits and returns to their investors. Sometimes they are pushed by pressure from you and me and mostly from the people who work inside of them to do the right thing by reducing prices to developing countries or licencing generics in those same markets, but this is not the true nature of a corporation. This is not to judge them — well, not more than usual — it is just a statement about their purpose in the system.
There has been a lot of investment in the search for a cure for HIV. Some of that comes from governments, who have really stepped up their efforts recently and invested in research programs to that end. Some of the investment also comes from the private side, from foundations and other such entities that, given their tax-receipt-granting status, ought to be considered public investments as well (the people who give to them pay lower taxes by doing so). Private pharmaceutical companies also invest in research, but often swoop in to purchase the products of some of the research funded in those other ways. And what is the result of the research when it leads to a commercially viable product? Private profits, almost all of the time.
I would be willing to bet that the first “cures” that become available will not confer immunity from reinfection on those who take them, so there is likely to be great commercial potential, particularly in developed countries. And all of that potential, whether the product of publicly, para-publicly or privately funded research, will lead to a whole lot of private profits. That, for me, would be a tough pill to swallow.