The Unseen Costs of My HIV Medication

On August 13, 1998, the SF Bay Area Reporter ran this headline, which trumpeted a new day in the battle to end AIDS.  The image explains it all:

This headline appeared 17 years ago this week

Imagine the shock of seeing this. I had come of age with a two-year life expectancy.  Every few months my expected time on this earth was rounded up a few more months, but the prognosis was always bleak at best.  This went on for nearly a decade, almost all of my 20's.  And there was no doubt that my health was declining.  Recently, I saw a man on a talk show, a leader in the HIV/AIDS community, who described a similar experience, and received a round of applause when he stated his doctors, “Got it wrong.”   This bothered me, and I have been struggling with the complexity of what his statement, and the audience’s reaction, really meant.  What I have decided is that his statement was inaccurate.  If effective treatment had not been discovered in mid-90s, those doctors would have been right.  To my mind, the man on the talk show and I were simply lucky, and I don’t like being credited for luck.  Perhaps we are both fighters, but we can’t know that’s what saved us, because that spirit did not save many other fighters that I knew.   To me it seemed that he, like so many others, is now taking his survival for granted. 

At the time this man and I were first living with HIV, there was an 85-90% mortality rate for people like us.  For many, the time from diagnosis to death was incredibly short.  For others it was a prolonged decline that ended in a complete loss of the person’s physical and mental faculties.  No one knew what random bit of fate allowed a handful of us to survive.  At the time, everyone believed that the disease would catch up to us sooner or later, and that belief was not wrong.  To make it worse, if AIDS didn't get us, Homophobic and AIDS-phobic acts of violence and degradation certainly would.  From the moment we began dying. the fear and hate of what we were bubbled over, in every corner of the country.

I came of age in a world of gay men united in a fight for our lives. We were battered by the horrible loss of the best and brightest of an entire generation. We chose not to lie down, not to accept that reality in our precious remaining days.  In my twenties we marched, hundreds of thousands of gays and lesbians, taking to the streets of Washington, New York, and San Francisco.  In unity we insisted that nothing but a cure would appease us.  Because I was young, I believed the community I had found was whole, strong, and lasting.  I thought we fought for everyone’s right to live a life based in whatever choice would make him or her happy. We all knew time was precious and not to be wasted.  We spent a decade preaching the “Silence=Death,” mantra.  We fought for the right to be queer, and to celebrate how our individuality made us more similar than different.  In that fight, we earned political respect as a collective group.  Or at least, that’s what I believed. 

The DC Mall during the 1993 March On Washington

The DC Mall during the 1993 March On Washington

But then, in the late-90s, people just stopped dying.  We were not cured, but the fact that many could suddenly “live with HIV” took us all by surprise.  It was a shock to the system, one so profound that I have yet to see it articulated in a way that does it justice. And because of this complexity, when it came to the subject of AIDS, many of us grew immediately silent.  Out of exhaustion, fear, indifference, or a hunger to focus on life instead of death, we slipped into a complicit silence.  We compromised.  We collectively accepted the idea that HIV will always be a chronic, but manageable, disease.  In silence, we let HIV infections rise in all sections of our community.  We let drug companies pocket profits, hand-over-fist, and allowed their customer base to grow each year.  In that silence, a part of me died.  I lost hope. Because from the moment we stopped dying, I could see us begin losing our unity.  Our collective drive to find a cure diminished.  Silence no longer equaled physical death, but it did mean the death of our collective voice.

As the shock I felt each weekend when i realized I had no memorials to attend began to wear off, the realization of the compromises already in play hit me hard.  I had believed we would stand strong until we could be fully cured.  Instead, each year I watched our unity decline.  We divided along lines of economic status, race, religion, and newer digital era fueled labels like bear, leatherman, twink, daddy, barebacker, and safe-sex Nazis.  We applied these labels to further separate us from the unity we once held tightly.  Some of us wear multi-hyphenate versions of these labels with pride.  Others are given them to wear, regardless of whether or not they identify with them, an oppressive act we would have never accepted 25 years ago.  When we were given the ability to survive, it was costly to those most affected, but is a giant relief to the rest.  And that may be the biggest divide of all.  

In our united stance against AIDS, we had earned a seat at the political table, but as soon as we could survive the disease, we horse traded the fight for a cure for the right to be married, an important and historic right, but it is not what won us a seat at the table.  And the fight for all the rest of our freedoms seemed to get pushed to the back seat.  As this quiet death of our unity occurred, we failed to notice that the word cure was almost never used in combination with HIV anymore.  The greatest cost of my medication is not the side effects, or the fiscal difficulties it brings to my life.  It was learning that given the right appeasement, humans would always compromise.  For many people, gay or straight, the ideal is only worth achieving if the cost is not too great.  When we were dying, the cost of not demanding a cure was more than we could live with.  When the loss stopped, giving up the ideal of finding a cure was all too easy for us. Until effective medication, I thought the drive of my once united community would sustain itself until we achieved the ideal. Perhaps I was young and naïve, but in anti-viral treatment, and our collectively eager acceptance that it was good enough, I lost the ability to hope for a cure for myself. 

One of the many images bringing back the Red Ribbon for awareness to end AIDS


Recently, I have rediscovered a desire to fight.  It came when I heard our President and the (RED) campaign begin to push for An AIDS Free Generation to be born in 2015.  At first, I thought they wanted that generation to live AIDS free, but the actual goal was for all babies, worldwide, to be born AIDS free in 2015.  In spite of the fact that this movement lacks a substantive gay voice, my resiliency was found in the desire of our President to make sure that if the generation could be born AIDS free.  But it is hard not to notice that there is an absence of gay leadership in this movement.  We have the all necessary tools and a little over a decade to make that a reality.  After many years of battling depression and guilt, I have found a new hope.  It is born in the knowledge that the treatments we have can prevent that generation from ever contracting HIV.  The only thing we lack is unity.  We lack the drive to make it happen.  We lack the voice of those of us most affected fueling the fight.  We as gay men, need to step up to this call.  We need to open the wounds we have been hiding, share our experiences we have tried to forget and help people find enough reason to stay negative.