Tuesday, December 24, 2013

Justice for Lamont, Research in Action and other end of the year laments

The end of the year usually tells us a lot about where activism has been, where it is going, and what it has meant.  And this year was no different.  There were Reverend Billy shows and Treatment Action Group awards, parties, rallies, flashmobs, salons and an a candle light vigil for an HIV positive man, Lamont Valentin, denied an organ transplant who died on the bus on the way home from his doctor’s office.  Increasingly, our activism takes shape as a struggle again such meaningless, avoidable death.  Throughout the year, cycling activists fought for speed limits on the road, and by extension the dangers of car culture.  There are inequalities on the road, just as there are in hospitals.  The battle for equal access to organ transplants would take place among a struggle against the inequalities of our healthcare system and its callous treatment of people with HIV/AIDS as well as other social outsiders.

I heard about Lamont Valentin’s demise at the Treatment Action Group’s Research Awards last week.  Walking into the swank awards party, full of activists in suits, I wondered if I even belonged there.  The man at the door gave me a once over before I mentioned Mark had put me on the list.  I have always really like Mark Harrington, running into him through the years across the city, catching drinks at Dicks, Healthgap meetings, or interviewing him for my dissertation, he’s always been more than kind, generous with information, and willing to ask the right questions.   Looking at well funded party, I thought of Steven Gendin’s last column for Poz Magazine, featured in Sean Strub’s wonderful memoir Body Counts.

These days my friends and I often mourn the end of activism.  Everyone we know is still doing AIDS work. But our involvement has become institutionalized.  We aren’t volunteers anymore:  we’re professionals.   AIDS is a 9-5 JOB.  It disgusts me to see what I have become.  Ten years ago we would never have accepted such gifts and garb from drug companies.  Now we’re come to count on it.  But nothing’s free, and whether we know it or not, we’re paying the price with our lives.

But,  we are also all a part of this system.  As Reverend Billy notes, we are all sinners in the church of stop shopping. (One of my last correspondences with Gendin was about a Reverend Billy meeting at my house in 1999, only months before he died the following Spring). No one is pure in this capitalist world, where our pensions, salaries, public education, and jobs overlap with the rise and fall of the tax revenue from Wall Street (even as it still controls our healthcare).

This was my first time at a  TAG event such as this.  It was qualitatively different, more swank than the fundraisers we’re had for the Lower East Side anarchist groups or Bronx based Harm Reduction groups that I’ve been involved with.   But it was also a room full of activists, including Michael Tikili, Ron Goldberg, Jim Eigo, Sean Strub, Peter Staley, Rebecca Pringle Smith, Tim Luceford. Jennifer, Brandon and much of the new ACT UP crew, who have brought so much energy to ACT UP over the last year.

Jim and company at top, Ron middle, Michael bottom. 

Friends from ACT UP were wearing ACT UP stickers.  Brendon told me about his journey to ACT UP from Occupy.  Jennifer told me about stumbling into ACT UP and loving it.  A place where fun and direct action take a premium over guild or old left dourness, the group is still my standard. 
This room was filled with activists.  I chatted with my hero Rebecca Pringle Smith and then with Tom Duane.  I prominently feature both of their work in my organizing and public health classes.  Pringle provides some of my favorite lines in the mid-1990s AIDS documentary Voices from the Front.  Duane’s advocacy for housing for people with AIDS is legendary.  We could all learn a thing or two from him.  It was fun to talk with him about the 30 percent rent cap bill, the politics of sex, puritanical politics, and AIDS activism.

This author and Tom Duane by Marcello Maia

Earlier in the week, Duane had posted a letter to TAG.
Letter from Tom Duane

December 11, 2013
Dear Friends of TAG:
When I ran for and won my New York Council seat in 1991, at the outset of my campaign I disclosed my HIV status by sending a letter to those I hoped to represent.
Among other points I made in that letter was that none of us could predict our future state of health and its impact on our lives—not on that day, the next day, or at any point thereafter. Whether any one of us would become sick was not under our control.
In the future, I said, there could also be treatments, medicine, procedures, etc., that didn’t yet exist that could save our lives or improve our chances to live and the quality of our lives. And thanks to TAG, I was right.
I have been HIV-positive for approximately 30 years. Even though I have lost a multitude of friends—so many close friends and loved ones—I and so many others with HIV have continued to hope, held tightly to those close to us, practiced self-care, and done our best to be compliant with medical recommendations. Many of us have also fought, not as if our lives depended upon it, but because our lives and the lives of those we loved and people we had never met and would never ever meet depended on it.
There was ACT UP/New York, civil disobedience, arrests, and brave, fearless, innovative, and technically brilliant actions that not only transformed HIV/AIDS treatments, but also transformed pharmaceutical and government policies for the well-being of everyone who was or would become sick.
And then there was TAG.
Since it was founded in 1992, I have had a habit of saying that TAG would save my life. I had faith that TAG and its incredible, brilliant work would keep me alive. No pressure there. But I meant it. TAG had to and would keep me alive. And so it has, for me and for countless other people around the world.
TAG is lean but not mean. Oh, for sure, TAG equals the fiercest fighters. TAG is not part of the government-institutional-pharmaceutical system, but it is so importantly and strategically smart about working within the system, no matter how they (or you or I) feel about that system. TAG leverages its modest 15 full-time staff and $2.4 million budget to unlock billions in support for research, and for domestic and global AIDS, hepatitis C virus (HCV), and tuberculosis (TB) programs.
TAG is action. TAG is responsible for cutting-edge, lifesaving, and life-improving treatments. Let me list just some of the incredible victories TAG has already won:
·        TAG is leading advocacy with the Obama administration to create a more ambitious, scientifically grounded National HIV/AIDS Strategy 2.0, with the explicit goal of ending the U.S. epidemic with a combination of universal access to high-quality HIV prevention and treatment, and continued research for a cure and a vaccine.
·        TAG is leading advocacy with the Cuomo administration in New York State and the incoming mayoral administration of Bill de Blasio in New York City to create a New York State and City Plan to End AIDS, building on the latest science, and on the rollout of New York’s ambitious Medicaid expansion in conjunction with implementation of the Affordable Care Act.
·        TAG is working with New York and other jurisdictions to achieve negotiated price reductions in high-priced HIV treatments so that universal access can become a reality in the United States sooner rather than later.
·        TAG is working with its allies in Washington, D.C., and around the country to preserve the vital research budget of the National Institutes of Health and to extend authorization of the President’s Emergency Plan for AIDS Relief (PEPFAR), which supports HIV treatment for 6 million people around the world.
·        TAG is leading efforts by hepatitis C activists around the world to accelerate the approval of and universal access to new direct-acting antiviral (DAA) combination drugs that cure HCV without toxic, expensive, injectable alpha interferon treatment. New research indicates that all-oral DAA combinations can cure most forms of HCV within a matter of months, with far less toxicity than other, interferon-based treatments.
·        TAG is leading efforts by TB and TB/HIV activists, researchers, and policy makers around the world to prepare the way for elimination of TB as a public health threat, through a combination of more investment, better diagnosis, treatment, and prevention, and more research to discover, develop, and distribute an effective vaccine, shorter and more tolerable TB cures, and better integrated TB programs.
All of us together need TAG, and TAG needs us. Please continue your generous support of TAG’s work, and if possible, please consider increasing it so TAG can continue to fight hard and smart to bring the end of the AIDS, HCV, and TB epidemics closer to today.
With deepest gratitude,
Tom Duane
Former New York State Senator from Manhattan
Jenna Wolfe opened up the event with a joke, sharing the news that the TAG gang were her favorites to hang with, plus that she was wearing a thong only a few months after child birth and the room roared with laughter.  This would be an festive, sex-positive evening.   

Jenna at top and the TAG Research in Action Honorees. 

Peter Staley would open his intro to Anderson Cooper noting not only the importance of the forth estate but his desire to spend his new years with this year’s RIAA recipient Anderson Cooper.   Throughout his work, Cooper has slowly injected a bit of righteous activism into public discourse.  We need a bit more love and less stigma, Elton John explained to Cooper on his show.  It is heartening to see a few people who use their position to actually inject something forthright, thoughtful and real into public discourse. Cooper accepted noting how much he was looking like Staley.  We are all dependent upon each other Cooper explained, thanking TAG for the award.

Mark Harrington followed introducing Joseth Sonnabend, the legendary AIDS doctor.  He reminded us that research and practice always overlap, particularly visa vie treatment and prevention, direct action and AIDS activism.  Sonnabend always reminded me that healthcare is a right not a privilege or a business, Harrington confessed, recalling a story of Sonnabend’s  support for a close friend of Harrington’s during the pre protease days when the AIDS carnage was omnipresent.  And people seemed to be falling like flies.  But Sonnabend helped keep his friend alive. treating him free of change.  He did that for thousands and thousands of people, because healthcare is a right not a privilege. 
Harrington noted that after years of a global focus this year TAG was taking a closer look the local AIDS front, doing coalition work and getting arrested with their friends from VOCAL and Housing Works, while pushing for an effective, coherent domestic treatment and prevention agenda.  And if the Obama administration does not update its prevention agenda, next year we’re going to be in DC getting arrested, he finished.  

We have to bridge the gap between harm reduction and treatment activism, Peter Staley noted at the beginning of the year at Spencer Cox’s funeral.  Over the last year this has started to happen.  But it means, cohorts of activists listening to each other.  

Walking out, a few members of ACT UP pointed out that the group had a demonstration planned for this week. I was glad I had gone to the TAG party, where I recruited a legal observer for our library action coming up the next day.  Mark Harrington chatted with a few of us on our way out.  Leaving mid town, I rode back to the Reverend Billy party in Bed Stuy and then back home.   It had been an incredible day out in the neighborhoods of New York, starting with a service among the rabble rousers at Judson that morning, the Reverend Billy show that afternoon, the TAG event and Rev. Billy party that night Bed Stuy.  

Riding home, it felt good to be alive and part of this public commons of ideas and action.  Arriving at home, I had received an email about the event coming up  on Wednesday.  

Hey Ben -- on Wednesday ACT UP is doing a demo to remove transplant barriers for HIV+ folks. It comes after Lamont Valentin, a long-time Streetwork employeee, died the week before last. I'll send you the info -- i had nothing to do with the organizing but am excited it's happening and thought it might be of interest

The issue certainly was.  This is a city which will break our heart.  Yet, it doesn’t have to, yet over and over it does.  Still, inequalities expand, separating the healthy from the sick, those with health insurance from those without, those with papers from those without, those with access to information from those without.  And today equalizing resources such as the social democratic polis, the public commons with institutions such as libraries and hospitals – these are under threat from a brand of neoliberal urbanism privatizing the public commons, while expanding social and economic inequalities. This would be the theme of our flashmob to save the NYPL on Monday

Picture of this author at the flashmob by Diane Green Lent.

Looking at the week, the Valentin action seemed to stand out.  The ACT UP facebook page announced:
Lamont Valentin was a man with a wife and son who needed a lung transplant to survive. He spent the past few weeks trying to get one of the 10 NYC-area transplant centers to commit to performing his lung transplant and add him to the national organ donor registry. But because he was living with HIV, NewYork-Presbyterian Hospital and other NYC hospitals refused to perform his lung transplant, denying him access to the national organ donor registry, which could have saved his life. Lamont died on Dec 3, leaving his son without a father.

Lamont was born with HIV in 1984 and was regularly told that he would not survive into adulthood. Despite these predictions, Lamont’s HIV became under control. In 2012, before the birth of his son, he became ill due to longterm lung afflictions that he developed at a young age. His health deteriorated to the point where he needed a lung transplant. None of these health issues were due to his being HIV+, and yet, HIV was used as the reason by NY-Presbyterian for denying him a transplant.

HIV status has not been proven as a determining factor for a person’s health post-transplant, and yet, NYC-area hospitals continue to regard HIV as a life-threatening condition across the board, even while hospitals in other states regularly perform organ transplants on HIV+ people.

ACT UP demands that NY Presbyterian and other NYC transplant centers commit to performing life-saving transplants on all qualified NY-ers regardless of their HIV status.

Join ACT UP in raising the public's awareness about the injustice Lamont suffered leading up to his death and about how New York’s outdated transplant guidelines could send more people living with HIV to an early death.

Date: Wed Dec 18
Time: 6pm
Location: Rockefeller Center (meet in the plaza between 50th and 51st St across from the tree)
Why: Share Lamont’s story and demand that NY-area hospitals perform organ transplants on qualified HIV+ people
Directions: Take the B,D,F,M to Rockefeller Center

ACT UP New York meets every Mon night at 7pm at the LGBT Center on 13th St.

Arriving at the action, I ran into Andy Velez and Kate Barnhart.  The last time I was at Rockefeller Center with Barnhart was World AIDS Day 1999 when she was locking herself up to the Christmas Tree there, the last time they would light it on World AIDS Day.  Barnhart has made a specialty of such gestures over the years.  Today her main activism is running a program for homeless GLBT youth, left on the margins of our city. 

Velez gave me a candle and we started to sing carols for Valentin.

Photos of the rally by Jerry Levy.

Lamonte Presente declared Andy Velez.  Others chanted it over and over, holding pictures of Valentin.
He is present declared speaker after speaker from ACT UP.  He will be present as we fight for access to transplants.  We know this drug could and would have kept him alive.  NewYork-Presbyterian Hospital wrote him off.  Transports and HIV can work together.  Yet, they do not because of outmoded donor guidelines.  This is an injustice. ACT UP is watching. In his memory, we will fight to pass Lamont’s Law making organ donations to people with HIV a reality.

Lamont’s wife stood to speak, visibly shaken.
By this point, the emotional tenor of the evening at a crescendo. 
Pausing between tears, we implored her to take her time.
I want to thank ACT UP she opened.  More tears. He should be here.  He would be.  He was strong.  He would be if the New York hospitals hadn’t denied him.  We will never forget him. That’s why we are here.  Lamont was a fighter.  He fought to the end. 
The crowd was cheering in her support. 

ACT UP is committed to fighting for him.
ACT UP ended with a die in on the street.

Walking away, I was painfully aware of the bitter cold that the city affords those on the outside.  Yet, people with HIV are still people, Jim Eigo noted.  Yet, stigma still exists, preventing people from seeing this, thirty years into the epidemic.

Later that night, we ate at our favorite restaurant.

As the week ended, students completed their finals and I joined friends for some caroling at Judson.

And friends from waves of activism – Library Lovers, Lower East Side Collective, Reclaim the Streets, Times Up!, More Gardens, Yes Men, Billionaires, An Absurd Response to an Absurd War – converged at Sophies for our 14th annual end of year salon.  New York is a place with so many stories, sometimes tragic, sometimes very funny.  We lamented what wasn’t done, the groups that fell apart, and planned for what needed to be done in the year ahead.  We talked about family, parents, holidays, street actions, ways to twitter, and enjoyed being a live together in the cold New York City of friends.   By the time the evening was over, most of us walked home through the village night, before riding home back to Brooklyn as the year wound toward solstice.