Friday, August 16, 2013

ACT UP Zaps the New York Department of Health, While Keeping Activism Fun

Photos ACT UP New York

Last summer a friend told me about a crazy weekend with his boyfriend.  They were fooling around and the condom broke.  They went to the hospital for post exposure prophylaxis (PEP).  At first the hospital said his insurance would not cover the procedure and then they tried to change him $2000 for it.  He eventually got PEP.   When my friend told me this, I suggested he take the story to ACT UP.  While he did not, in recent months others have.

We have long known how to prevent the spread of HIV.  Housing is HIV prevention; treatment is prevention, harm reduction modalities such as syringe exchange, safer sex, etc.  A holistic approach to prevention, in which health is supported in its broadest dimensions, is vital.  Technology has not been the problem, but political will has been. 

Amidst this, we have a Department of Health (NYDOH) long on data collection.  The NYDOH is better than many.  They support syringe exchange programs.  They also support Names Reporting which erodes privacy.  They collect lots and lots of data.  The question is what they do with it and how they support aggressive efforts at prevention seen in places such as Brazil where treatment and prevention support each other.  The country supports frank, explicit, sex positive sex education on the streets, giving people information outside of ideology, which helps them prevent the spread of disease.  People are encouraged to get tested as treatment is available on demand.   Cheap medications were made available when the country challenged big pharma and brought in cheap medications.  Pills cost pennies, greed costs lives ACT UP has long reminded us. 

Here in NYC, the NYDOH loves to collect and talk about data.  Yet, does the DOH make what they know from the data translate into frank, harm reduction based, aggressive, explicit evidence based interventions which prevent the spread of HIV/AIDS and other diseases?  Does it support holistic efforts to prevent a range of diseases, while helping make treatment available on demand for everyone who needs it? 

In recent months, ACT UP has taken on the prevention mantle once again.  Long term prevention activist Jim Eigo and company have worked to highlight the point that unless we act, more than half of young gay men and trans women will be HIV positive before they are fifty. 

In this respect, ACT UP is back with a vengeance, translating knowledge into action to challenge the systems of inaction which allow the spread of HIV to run rampant. 

An ounce of prevention is better than a pound of a cure, I said to my daughter as we traveled to the ACT UP demonstration yesterday

The facebook invitation, thank you Peter Staley for posting, announced:

Join ACT UP and allies at 1 p.m. sharp to protest the NYC Dept of Health and Mental Hygiene. 

No funding! No good data! No access to prevention drugs! No money for safer sex!

An HIV Prevention Emergency hits NYC & its Department of Health & Mental Hygiene (DOHMH) does nothing. 

Join ACT UP to demand:

*That DOHMH (Dept of Health and Mental Hygiene) publicize life-saving anti-HIV drugs like PREP and PEP (Pre- and Post-Exposure Prophylaxis) to at-risk NYC communities.
*That DOHMH fund city HIV prevention in the face of federal budget cuts.
*That DOHMH release accurate data on yearly HIV infection rates, instead of relying on outdated statistics that hide the HIV epidemic.
twitter: @actupny

Address: 42-09 28th Street, Long Island City, Queens. Intersection of 28th St. and Queens Boulevard.

I have watched ACT UP thrive all summer long.  While some say ACT UP is back, its important to remember the group never left.  Its democratic structure, allowing people to come in, drop out, stay involved, this has helped the group thrive and stay the course over a quarter century.

Walking up to the rally, I was feeling so glad that ACT UP is still here making trouble.

Seeing the picket line, I said hello to Michael T and Jim Eigo.  

And then greeted John, who corresponded with me about our book years ago.

“We have to have more prevention and less jails.”


“Health Care is a right, pump up the budget,” those on the picket line chanted, riffing on the old “Pump up the Volume” anthem from decades ago.  Such chants made the group great.  They still do. When all the old left was serious and dour, ACT UP referred to rave anthems in its chants.

Someone gave me a placard with the words: “DOH Get a Clue, PEP for all, not just for you!”

“What’s PEP again I asked Mark in the line.

“Post exposure prophylaxis.”

“I knew that.”

“Ben Shepard you are not a good prevention activist,” he joked, smiling.

“We live in an acronym diseased society,” I retorted.  

“Absolutely negligent, positively fraudulent!”

The point of ACT UP is that activism should be fun.

“DOH, get a clue, PEP not just for you!” activists screamed, charging the NYDOH with providing for itself without making treatments widely available to others.   DOH staffers were staring out the windows.  No one wants ACT UP coming to their office building.  Usually ACT UP is right.  The beauty of the group is that their actions are supported by research.  The group is usually ahead on the facts.   What other group chants that it wants better data?

“All you do is give us rubbers!  We want data.  We want numbers!” the group chanted.

"And the rubbers aren't very good," someone chimed in.

Listening, a man walking out the DOH laughed.  "That pretty much says it all."

Photos ACT UP New York

Chanting, we marched, made new friends, talked, ACT UP hung a banner and let the world know that the DOH is on their radar.  Direct action gets the goods.  An ounce of prevention is worth more than apound of a cure.  This truism is worth acting on. Thank you for reminding us of this ACT UP.

After the zap, Jim Eigo wrote on facebook:

Neat ACT UP demo today at the NYC DOHMH HQ in Queens. Everyone I talked to felt good about the action. (Even the weather cooperated! Glorious day!) DOHMH workers snapped up our fact sheets so quickly that we ran out! We started lots of conversations with the workers, which was gratifying. And after the outside demo, several of us spoke out at the public comments segment of the HIV Planning Council meeting that occurred inside the building at 2 PM. (Special thanks to Amanda Lugg who sits on the Council and signed us all up for public comment even while we were still demonstrating outside.)
Thanks to all you ACT UP members that made this demo possible. This one really did require a lot of us working on different apects of logistics and message. And lots of ACTors UP who knew they couldn't make the demo because of work or other committments made signs or worked on press materials or worked social media. Maybe best of all: I think we as a group learned things (and developed skills) in carrying out this demo that we can take into the next one, and the next...

Final thoughts on prevention...

I’d like to talk about HIV prevention. I know that this council is charged with thinking about care and treatment for people already dealing with HIV. But in today’s epidemic, as I’m sure you’ve heard, Treatment is Prevention. Less and less is spent on prevention that targets people who are HIV-negative and at risk. The condom code is in tatters. For those whose risk is sexual, the treatment of people who are HIV-positive is the only significant prevention we’ve done for a while. Given the confused, half-hearted introduction of pharmaceutical prevention, PrEP, over the past year, treatment is likely to remain our most significant prevention for a while.
Yet 20% of Americans living with HIV don’t know it, and only 28% of Americans living with HIV achieve sustained undetectable infection. How many hundreds of thousands of fresh HIV infections will occur before treatment alone puts an end to HIV transmission? Our failure to supplement Treatment as Prevention with prevention that targets people who are HIV-negative and at risk tacitly accepts all those infections as inevitable. ACT UP accepts no new infections.
On the horizon the Affordable Care Act will give statutory standing to the notion of prevention for the first time in American healthcare. To prevent a whole new generation of HIV infection, we will have to extend the HIV Cascade of Care (that you deal with) across the great sero-divide and reconceive Prevention as Treatment, as ongoing care for people who are HIV-negative and at risk, giving them the skills and all the available tools, pharmaceutical and others, to stay HIV-negative. We will have to reengage at-risk communities in HIV prevention again, making it part of a wider community discussion about health and pleasure and how we can have both.
—Jim Eigo, ACT UP NY, 

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