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.
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.
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.
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