Regarding the "End of AIDS" Debate
Have we looked deeply enough into our motives?
First, this blog entry is meant as an explanation of questions that have haunted me for many years. Even before the current "End of AIDS" debate began, I wondered about the questions I pose here. I skirted with the subject briefly in my novel, but I did not delve as deeply into it as I will here. I want to be very clear that this is an exploration of a personal fears, and some doubts I have about the motives behind much of the debates we see in our community. It is not a suggestion of any one individual's or movement's actual motives.
Why are so many of us not willing to embrace the movement?
The other day, I was terribly disheartened by Mark S. King’s (MyFabulousDisease.com) op-ed on TheBody.com entitled “The End of AIDS is a Cynical Lie.” To see this on the heals of learning about Zachery Quinto’s unfortunate and sex-phobic remarks, I have had to think about why so many seeming smart people are so suspicious about where we are in this moment in history.
I think King's work usually brave and important. And I love Quinto’s work as an actor. However, on this issue, I fear that they have both joined the ranks of naysayers who allow their personal vision of perfect to be the enemy of the good.
While the jury of public opinion may still be out, the academic and medical research communities seem to believe that we have the tools to nearly eradicate AIDS, and we have had them, unknowingly, for decades. With implementation of PREP and the knowledge that individuals who have undetectable viral loads are very unlikely to spread HIV sexually (see below), the tools to nearly “end” AIDS are in our hands. These studies also suggest that gay people simply have more sex (again see below) and we need to accept that this is true and stop wishing it would change.
The rate of HIV transmission between couples - one HIV + - One HIV- - when the + partner was on appropriate medication.
The only unknown factor in the equation of whether AIDS can become a rarity in our lifetime is now only a measure of public health policy, and the reception of that policy by the general public. And there is no denying that those are still big questions.
But in my way of thinking, those that would draw a distinction between the literal end of AIDS and the near eradication of it are limiting the possibility of the near end being achieved. The argument that it is not really a cure is like saying the polio vaccine wasn’t good enough because it didn’t fully eradicate polio, or that TB treatments shouldn’t have been implemented because people still contract TB. In this day and age, we don’t actually celebrate the "end" of those diseases. But we acknowledge that their rarity is worth being called advancement, my sister would even say miraculous. And that is what I hear when I hear someone preach about the “end” of AIDS. And I am more than happy to hear the metaphoric-rallying cry, because it will take that kind of hope to achieve the "near end of AIDS".
King, like many others, has decided that because the promotion of “end” of AIDS is a metaphoric and not a literal end, that it is a sign of a cynical manipulation, designed to invigorate stale AIDS services fundraising. In some cases that may be true. But my experience is that most people who work in social service believe what they preach and that what that hope for is that the public will embrace a near end as a better reality than the one we face now.
But why would someone like King, who has spent his life in AIDS advocacy draw such a hard lined and disheartening stance? If we are in a world of degrees why are those most impacted insisting the arguments be linear? These are the questions that make my fears take root and my brain spin out of control: Is it possible that gay men of the past several generations are afraid of life without AIDS?
I am forty-five and I have not known a world without AIDS. It was there when I first had sex, when I first though I was gay. I have been HIV+ for twenty-five years. It is as much a part of my identity as my hair color. It is deeply intertwined with my sexuality and my sexual practices. And if AIDS does not exist, I am instantly as anachronistic as a wind-up watch in a world of digital timekeeping. And that, when closely examined, can be terrifying. Like many in my community, I fought long and hard to make living with HIV normal, and okay for others. What am I if that fight is simply no longer needed? How do I simply stop fighting when its all I have ever known? What am I if my life work results in that work being obsolete? Many others have done this kind of work to become self actualized with an HIV+ or Living-with-AIDS identity. Is it possible that the fear of embracing a near end to AIDS is partially a fear that this reality will drastically change the identity that we have so struggled to accept?
Is it possible that other anxieties are being transferred onto this debate? Is it possible that AIDS has been so ingrained in our identities that we are afraid of the world in which HIV might not be a normal occurrence? Are we incapable of addressing our own fears- at the cost of the health of others? Are we so self-absorbed and insecure that we would rather see HIV continue to spread at alarming rates, rather than find ourselves counted among the the last, lonely survivors on the wrong side of a clearly drawn line?
If that line of separation became real, if we really became the last generation to fear spread and infection with every sexual act, then would we not have to rethink all our choices? Would the fear and anxiety we once felt as being social outcasts not suddenly be revisited? Would we need to take up a different kind of fight to keep our dignity intact and not be forgotten? We know the realities of a world with AIDS and we are comfortable, even complacent, in it. What happen if the rules completely change and we have to find a new way to be?
Again, to be very clear, I am not suggesting that these ideas are what motivates King or Quinto. Mark and I have only exchanged social media niceties, I don’t know him well enough to state that he has not resolved these questions within himself. And I have never met Quinto. But I am suggesting that maybe some in our community might take a closer look at the motivations behind their skeptical rhetoric. I suspect that the fear of becoming obsolete is behind much of Michael Weinstien's objections to PREP. We know his rhetoric about the "end of AIDS" has been confusing to donors and has lead to discussion of fundraising as a stunt. Like King, I fear the motives of this debate are both misdirected and wrongly motivated. We simply disagree on the motives and the direction.