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January / February 2011
by Oriol R. Gutierrez Jr.
Eric Sawyer is the first recipient of the AIDS activism award given by Housing Works, an organization he cofounded in 1994. In 2011, he marks 30 years of surviving HIV while fighting for the lives of others. He shares his story of survival, thoughts on his current role at UNAIDS and a look at his future.
(To watch Eric Sawyer at Fashion for Action 2010, click here.)
How does it feel to be honored by an organization you helped found?
I became symptomatic for HIV in 1981 and tested positive for HIV in 1985, the first year the test was available. In those early days prior to treatment, you felt you were on a conveyor belt leading to your grave. I didn’t plan more than a couple of months ahead. So, it feels a little strange to have survived long enough to get an award for my work.
I was honored to receive the award [in December 2010] from Housing Works because the organization epitomizes the spirit of the HIV response, which is based on the concept that every life matters. To be honored by [Housing Works] for doing work that I feel I have an obligation to do is icing on the cake.
You also cofounded ACT UP. Were the groups connected?
I got involved in ACT UP primarily because of my friend Larry Kramer. In 1987, Larry called me when he was getting ready to give a call-to-arms speech at the LGBT community center in New York City. There had finally been a $100 million allocation [by the U.S. government] for AIDS research, but he discovered almost nothing was being spent. He wanted the media to know the government wasn’t taking action to find treatments or a cure for HIV.
His plan was to start a civil disobedience organization to draw public attention and put pressure on the government to take appropriate action.
I had just lost my life partner to HIV and was really angry there was no way to help save his life. So I agreed to come to his speech and be a plant in the audience and to give a cheerleading spiel—a pledge of support to organize the first HIV/AIDS civil disobedience action. The rest is history.
Despite ACT UP’s success, HIV continued disabling people, particularly poor people, and no one was providing them with housing or other needs. Many people faced horrible discrimination from their own families; AIDS groups didn’t offer housing; and no housing groups wanted to take on people with AIDS.
So, the housing committee of ACT UP organized to advocate for medically appropriate housing and access to entitlement programs. We challenged the government’s policy of housing people with AIDS in shelters with people who had tuberculosis and got a court order for people with AIDS to be housed in medically appropriate housing. That opened the door to get capital funds to build AIDS-specific housing. In 1994, Housing Works was born.
You also cofounded Health GAP. How was that group born?
The situation in the United States was bad in the early days of the HIV epidemic, but it was much better here than in the developing world. I decided the bigger need was ensuring access to treatment in the developing world.
In 1996, I was asked to speak at the opening ceremony of the XI International AIDS Conference in Vancouver. There was a lot of hype about new treatment that year. David Ho, MD, was named “Man of the Year” by Time magazine that year for helping to develop highly active antiretroviral therapy. There was even talk that combination therapy involving protease inhibitors could constitute a functional cure.
But the truth was the cure really wasn’t here and the treatments we had were highly toxic, really expensive and out of reach for 97 percent of the world’s HIV population. So in my speech, I gave a wake-up call to the media and the public health establishment saying we needed an “access to treatment movement.”
My message resonated. “Bridging the Gap” became the theme of the XII International AIDS Conference in Geneva in 1998. As a result, Alan Berkman, MD, asked me and a few others from ACT UP to create an ACT UP–styled movement for access to treatment in the developing world. In 1999, Health GAP was created.
Tell us about your current role at the Joint United Nations Programme on HIV/AIDS (UNAIDS).
For many years, I had been a collaborator from the nongovernmental organization (NGO) side with the HIV program at the World Health Organization and then UNAIDS.
After a brief stint in a think tank project called AIDS 2031, I was hired as a civil society partnerships advisor for UNAIDS in 2008. I moved from being an outside organizer of NGO efforts to being an inside facilitator of NGO involvement.
I’m currently facilitating NGO involvement in the 2011 high level U.N. meeting on HIV, which will be a review of the world’s progress with regard to obtaining universal access to treatment. I’m also working on a campaign called “Light for Rights.” It’s a World AIDS Day commemoration project designed to highlight the need for human rights protection for all people with HIV.
How does it feel to be a long-term survivor of HIV?
I’m obviously really happy to have survived HIV for 30 years. The alternative of dropping dead still isn’t very attractive. Many long-term survivors experience the joy of continuing to enjoy life, but they also have a certain level of survivor’s guilt.
One of the questions that I’ve always asked myself is, “Why is it that I have survived a fatal disease like HIV and more than 26 million others have not?” It’s because I was able to access the latest medical technologies as soon as they were developed. I feel because of my privileged access to care and treatment, I have an obligation to fight for the people who don’t have that privilege.
Where are we in terms of fighting HIV/AIDS today?
The economic crisis is creating formidable challenges for obtaining universal access to treatment. We’ve made progress. We’ve increased the number of people on ARVs from 1 million in 2006 to almost 5 million in 2010. But, we have another 9 million who need treatment immediately.
We know how to stop the spread of HIV. We have effective treatments that can help people with HIV live a long time. But we don’t have either the human or financial resources to provide people with prevention education, condoms, clean needles or ARVs. To win the battle against HIV/AIDS, we need a massive scale-up of human resources and money.
What’s your assessment of the current state of AIDS activism?
We’ve seen AIDS activism drop off a great deal partially because of our successes. When people with HIV in the United States were dropping like flies, there was a lot of motivation. When effective treatments arrived, many activists went back to their daily lives.
We have to find a way to encourage young people to enter the HIV response for the long haul. We need to develop a sustainable mechanism to fund activism, to fund advocacy campaigns and to fund human resource development and capacity building.
We’re going to have huge challenges in mobilizing the activism needed to effectively combat HIV until we find such funding. We may have to draw on PEPFAR [President’s Emergency Plan for AIDS Relief] funds or bilateral aid or develop special funding mechanisms to develop programs and build capacity in NGOs.
Until we reform laws that criminalize behavior, and until we ensure that people at risk for HIV or living with HIV have equal rights, and until women have equal rights, we’re going to have trouble. The absence of human rights protections undermines the HIV response.
Search: Eric Sawyer, Housing Works, UNAIDS, ACT UP, LGBT, Health GAP, WHO, NGO, World AIDS Day
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comments 1 - 13 (of 13 total)
poz83diag92alive2011, Boston, 2011-02-24 08:38:40
In response to Yuri in Queens who thinks a man of Eric's caliber is trying to generate sensational copy for the 4 yrs. he was poz w.o. the test-I know the exact date I was infected, shared needle, huge lymph node infection response, 10 yrs. no symptoms-different bodies different responses-your point is pointless Yuri, the man is not making it up, he obviously has clear idea when he got it-not rocket science-and its no picnic is an understatement, my 27 yrs, the last 17-chemoforlife have been bad
poz83diag92alive2011, Boston, 2011-02-24 08:30:03
This man is truly a hero. As a person who has chosen to remain in the silent heterosexual wing of survivors I feel some shame for what I might have done other than having 2 healthy children and managing to trail Eric by 3 yrs. in surviving. Stigma and shame remain enormous hurdles to educate the straight community. I have done a small part in being part of research for allowing poz dads lead "normal" lives,- yet 9 million untreated is still genocide, feel shame for waiting in wings-kudos to Eric
Stephanie, Brooklyn, 2011-01-28 02:27:54
Excellent article. Yes more education has to be for the woman. I had belong to an affected and infected Woman Prevention Group for 5 years. The program was defunded in May 2010 because their focus was going to be on infected only. I'm sad because I loved the group. Again thank you for excellent article.
Michael-Bruce, Easton, PA, 2011-01-27 16:30:43
No one wants to hear a Debbie Downer, so Eric's article of empowerment through activism is inspiring. Many 30-yr. survivors have succumbed to illnesses associated with long-term use of medications - osteonecrosis, liver disease, tooth decay. I might have a good 5 hour run one day a week. With both diminshed income and physical capacities, surviving is a bitch. I'm happy that Eric appears so well-adjusted, healthy and energetic. But it's not reality for all LTSers. HIV is not a picnic.
Catherine Hanssens, New York, 2011-01-27 11:06:51
Eric, thanks for doing what you do, as long and as well as you have, and for explicitly recognizing the central importance of human rights and the importance of challenging policies like criminalization that are a government-sponsored affront to those rights.
Larry B. Hayes, S. Florida, 2011-01-24 12:12:35
I met you in 2005 during the C2EA initiative organizing meeting in Washington, D.C. We all shared a church quarters with bunk beds. Charles King was also one of our bunk mates at the time. You kept it very business-like. You are a leader.
I grew up in Oklahoma City and represented Oklahoma then in lobbyied Senators Coburn and Inhoff, and then still in office, Fmr Rep Istook. It was a tough assignment. Istook subs for Rush now.
Mozel Tov Sir!
Jill, Greenbelt, 2011-01-21 20:12:46
I too am celebrating 30 years positive this year. Kudos to you and all your important work you continue to do for the HIV community. You are an inspiration and a symbol of hope for those who believe this is a short ride. I wish you many more years of health, progress and commitment. You make me very proud.
Frederick Wright, jacksonville, 2011-01-20 10:17:44
Yes .. I agree Thank God for the 30 years and more.. the why my be a loud and proud Thank God....
Yuri, Queens, 2011-01-19 12:27:05
The work of Mr. Sawyer is remarkable yet while it may bestow additional honor on Mr. Sawyer, it is not accurate and actually misleading to claim having HIV from 1981 since the test was not available until late 1985. Having survived HIV for 30 years makes a good copy but such unsupported claims do not make for good science and education, giving an impression of long latency for HIV before any kinds of experimental treatments became available.
Nathan Masson, Camp Springs, MD, 2011-01-13 21:02:34
Congratulations on your milestone achievement, having transcended time wth this disease. I contracted on 17 birthday and will be 48 this year. Thank GOD for your longevity and ability to inspire hope in others. I applaude your efforts, as I continue to celebrate my own life.
David L Cato, Little Rock, 2011-01-13 20:48:27
I too tested positive in 85. Though have not created a fantastic organization/operation for those in need.
David L Cato
JIMMY MACK, SOUTHAMPTON, 2011-01-11 11:14:45
I had the great pleasure of knowing Eric back in the 80's when his partner was dying and am not surprised by all he has accomplished in his life. Thank God he is a long term survivor like myself. Eric, thank you for the work you do, would love to hear from you.
arcane1958, Atlanta, 2011-01-10 17:30:20
comments 1 - 13 (of 13 total)
He is a role model for all of us..Life is about taking care of others who need you most..and Eric's actions exemplify the best we should seek to be...lets be "our brother's keeper"...Thanks Eric for taking the lead.