I was proud yet bemused to read of your recent lifetime achievement award from GMHC. It is an irony of history and sentinel to the arc of your life that such obvious recognition, long understood, should be at long last proclaimed. Your clear and bold call for activism around an HIV cure is a coda to that arc of accomplishment. But the irony goes a bit deeper. As much as the award varnishes your legacy, your comments in accepting the award show it to be unresolved. Your history of recognizing obvious yet unproclaimed problems and outing them -- loudly -- is overshadowed by your emotional denouncement of the last great unfinished strand of that arc.
You expressed the chagrin that many of us felt at apparent implosion of the ACT UP movement. The breaking off of so many of its committees and groups meant the entrenchment of ACT UP ideals throughout our newly rescued community, at the cost of our communal solidarity. It was a response to dramatically increased options for many of us, and it was also a political reality steeped in grief, fatigue and a necessary re-organization of efforts. Of course it was dramatic and emotional -- we were at war for our lives. But, your disdainful comparison of the present ACT UP and GMHC seemed more than simple disappointment in that history.
You say that the desire to ACT UP evaporated. It may have seemed that way, given the profound shift from despair and disease to hope and healing. Our fragmentation meant that the ever-present disagreements about goals, tactics and blame came closer than ever to forever sidelining the job of ending the AIDS crisis. But the combination of core members who never really stopped, or left, the return of former members and the weekly influx of new members means that the will to ACT UP is alive and well -- today.
For the last two years, ACT UP has protested, fought government obfuscation, demanded fair treatment from pharmaceutical companies and worked in broad coalitions to end the epidemic. In meaningful ways, ACT UP New York is back, and getting things done.
- We worked with TAG and transplant doctors to remove HIV infection from the list of absolutely contra-indicated conditions for heart and lung transplant.
- We are fighting with a coalition of others against government policy makers, pharmaceutical manufacturers and insurers that have jointly meant denial of access to the new hepatitis cure for people with hepatitis C.
- Our members have helped draft the campaign to End the Epidemic by 2020, and we protested directly to Governor Andrew Cuomo to release plans and funding for the campaign.
- We pressured the Centers for Disease Control and Prevention as well as New York's state and city health departments to recognize and aggressively promote PrEP and PEP as pharmaceutical blockades against HIV transmission.
You may not have been aware of the range of our recent accomplishments. The dearth of awareness about the work of ACT UP has more to do with the invisibility of HIV overall, the still all-volunteer nature of our group and, in part, the lack of support from people whose support we could really use -- people such as yourself. Your derision of our efforts was more than an attempt to support the very critical need for activism toward a cure for HIV, and may result in further splintering the efforts we should all be joined in.
With the tremendous gains made in rights, care and options for people with HIV, some inequities may appear less significant in relief. Your own victory getting listed, then transplanted, may have made the inequities still facing people with organ failure and HIV fade into the background. But ACT UP today has its eye on that fight, and you could be helping to launch the necessary organ failure registry for people with HIV that we have called for, rather than denigrating our work.
Hepatitis C it is the most common coinfection among people with HIV -- TAG and ACT UP are both working strongly against the passive genocide of our system's price-sensitive cure policy. Yet you mentioned in your remarks that it is painful to think of us. How much more painful must be the suffering of those made to wait until their hepatitis C becomes debilitating before qualifying for a cure. How much might we learn about the future fight for access to an HIV cure, if we had your support.
Perhaps you think that the campaign to end AIDS as an epidemic is impossible without a cure. But we recognize that the vast majority of the HIV burden is discoverable, treatable and/or preventable. And we have the pharmaceutical, epidemiological and social tools to reduce HIV to a trickle, but it rages on. The political will to end AIDS is what is missing, the political will for a cure and a plan to end the epidemic scope of HIV with the tools we already have. The divisiveness you express toward those of us fighting HIV in the way that we learned on the floor of ACT UP and the streets of New York only hobbles the fostering of that will.
You stated, in your remarks, "that we have a drug that would allow us to do what we did and live the lives that got us in trouble in the first place." Your dislike of PrEP is well-known, but that remark smacks of nothing so much as the abstinence-based HIV prevention of our enemies. The hundreds of scenarios in which a person could prevent HIV with PrEP or PEP should be enough to overcome such doubt. The ultimate struggle and slogan of ACT UP was, "Drugs into bodies." Pharmaceutical prevention, including PEP, Treatment as Prevention and PrEP, all enable people to block HIV transmission. It is hard for me to see why condomless protection causes you such pain.
What a shame it would be to let your disagreement with the promotion of pharmaceutical prevention disturb each of our chances to end AIDS, by any means available. When I saw you last, I brought Geri Wells to see you in the hospital. You said she was your hero. She and I have had many a long and contentious argument over PrEP, and she may share many of your views, but she has never cast our work aside so disdainfully.
I am one of those veterans returning to the fight at ACT UP today. I spent much of the nearly twenty years after my own disease remission applying the skill and passion I learned at ACT UP to geriatric cardiology as an echocardiographer and clinical research manager. When I recently helped your partner and Peter Staley with advice about your care and lobbied on your behalf to a rehab facility, I was so proud that the arc of my life enabled me to help you.
Ann Northrop helped to lead a teach-in on meeting dynamics. As a present day facilitator, it's surreal to realize how often I have asked myself, "What would Ann Northrop do?" (WWAND). During my first ACT UP Gay Pride march in over 20 years, I was thrilled to see Mark Harrington (who arguably led the most dramatic departure from ACT UP so long ago) join our contingent. Charles King of Housing Works led the campaign we joined to have Governor Cuomo declare an End to the Epidemic by 2020.
In fact, most of the extant HIV groups that were born as ACT UP committees or are now staffed by former ACT UP members have joined us in actions, or led us to campaigns, or have resumed at least consistent lines of communication to the floor of ACT UP. Along with its current work, ACT UP continues to inspire others.
Where are you Larry?
Acting Up (again),
Steve Helmke is a member of ACT UP New York.