Sean Strub

I'm looking forward to a community forum on HIV Criminalization on May 24, at the LGBT Community Center at 208 West 13th Street in New York.  I'll be on a panel with my colleagues Beirne Roose-Snyder, from the Positive Justice Project and the Center for HIV Law & Policy, and Robert Suttle, from the SERO Project.  We'll also show the short film HIV is Not a Crime.

ACT UP's 25th anniversary this month has prompted reflection on ACT UP over the years. The column that follows is what I wrote in POZ on the occasion of ACT UP's 10th anniversary, in 1997. I am proud of my work with ACT UP and believe it played an important role in my survival. But amidst the commemoration of and reflection on ACT UP's triumphs and successes--now immortalized in film and books and other media, as well as in the memories of those involved--I hope we'll also look deeper into the roots of the empowerment movement for people with HIV. Those roots pre-date ACT UP, with the Denver Principles, the People With AIDS Coalition and similar efforts. I also hope we'll not overly-romanticize activism of those early years and not lose the ability to look critically at our own community's efforts. We made mistakes, to be sure, including through ACT UP. If we're to be responsible to our history and to the lives of so many who fought for our survival, we need to be honest and clear-eyed about what we did and did not do. Some of our greatest triumphs, like expediting the drug approval process to get drugs to people who were dying and had few or no other choices for a chance at survival, also had unintended consequences, like playing into a corporate anti-regulatory agenda that has not always turned out well for consumers of prescription products. We need to see our activism in a broad context, understanding how it affected us as well as the broader society, in order to honestly appraise and learn from those years.

---

S.O.S.-March 1997

We need grass-roots activism as much today as when ACT UP began

Last December, I got a call from a TV news producer. The White House had just released its so-called "National AIDS Strategy." The produce asked, "Doesn't this report sound like the president has embraced the goals of ACT UP?" I explained that he had done no such thing, that the document was yet another elaborate (and sadly familiar) public-relations con-a clever repackaging of existing do-little policies and lofty rhetoric.

But her question reminded me of how far we've come in the decade since ACT UP began-and how far we've yet to go. In June 1987, when I was arrested in front of the White House, along with 63 others demanding AIDS action, Ronald Reagan had only the night before-six years into the exploding epidemic-given his first AIDS speech. His AIDS policies were an evil brew of malign neglect and cruel stigmatization. Talk of quarantine was in the air. The FDA took forever to approve drugs. Researchers ran pitifully few-often unethical or repetitive-trials, with no community input. The few promising drugs were priced beyond greed.

News about the Oslo Declaration from Edwin Bernard at the HIV Justice Network.  I am glad to participate in this effort and encourage others to sign on to the statement.  - Sean

A group of 20 expert individuals and organisations from civil society around the world working to end inappropriate criminal prosecutions for HIV non-disclosure, potential exposure and non-intentional transmission from around the world came together in Oslo, Norway on 13 February 2012 to create the Oslo Declaration on HIV Criminalisation.

The Declaration provides a clear roadmap for policymakers and criminal justice system actors to ensure a linked, cohesive, evidence-informed approach to produce a restrained, proportionate and appropriate use of the criminal law, if any, to cases of HIV non-disclosure, potential exposure and non-intentional transmission.

It is a direct response to the increasing numbers of people living with HIV who are being arrested, prosecuted and convicted and the rapid rise in the number of countries enforcing, enacting or proposing HIV-specific legislation to enable these prosecutions. This, despite a growing body of evidence suggesting that the criminalisation of HIV non-disclosure, potential exposure and non-intentional transmission is doing more harm than good in terms of its impact on public health and human rights.

At a meeting in Oslo, Norway, this week, UNAIDS Executive Director Michel Sidibé was characteristically frank in his comments prior to viewing my short film, HIV is Not a Crime, and hearing comments from Robert Suttle (who is featured in the film).  Sidibé's honesty is one reason why he is so widely respected.

"I was shocked, I am Executive Director (of UNAIDS), I am supposed to be very committed to all the human rights issue and trying to push this agenda... and I'm not even knowing a minimum of those unacceptable things that are happening around me.  It was shocking for me and upsetting to hear the stories of Nick and Robert" said Mr. Sidibé.



To see more specifics about what Mr. Sidibé found so shocking, take a look at this except from the HIV is Not a Crime documentary project. 

Unfortunately, Mr. Sidibé is far from alone, but perhaps his acknowledgement of his need to learn more about what criminalization means in the lives of people with HIV will prompt others to educate themselves as well.  Even those aware of the phenomenon typically have little understanding of the severity of the injustices inflicted on those prosecuted or the devastating effect criminalization has on driving stigma and further transmission of HIV.

SERO Project is my new initiative to combat HIV-related stigma, discrimination and criminalization--including the HIV is Not a Crime documentary--and we are in need of financial support.  If you're in a position to help, please go to this link. 

If you scroll to the bottom, you'll see the "donate" tab.  And if you're not one of the 14,000 people who have already viewed the short film I've already made (which is part of the larger work in progress), you can do so here.



Special thanks to Nick Rhoades and Monique Moree, who also are featured in HIV is Not a Crime, my cousin John Swaner and Broadway Cares, for their ongoing support of my work and to George Ayala and the Global Forum on MSM who helped send me and Robert to the meeting in Oslo.  Also to Edwin Bernard (whose blog is required reading for criminalization advocates around the world), Nicholas Feustel (who volunteered as a cameraman and gave me a much-needed lesson in videography), Bret Malone and the Philadelphia Center, in Shreveport, (for initiating advocacy to address criminalization and supporting Robert in this work), Susan Timberlake and Sara Simon of UNAIDS, Leo Herrera/HomoChic (who edited HIV is Not a Crime), James Krellenstein (a research volunteer and my frequent sounding board) and Xavier Morales, who has put up with my criminalization obsession in recent years with unflagging support and grace, including today, when I was absent on Valentine's Day. 

There are so many more to whom I am grateful, including a large crew of amazing friends and supporters in Louisiana and Iowa, and various colleagues at GNP+/NA, the Positive Justice Project, POZ Magazine and elsewhere, but I'll get to them in due time.  Thanks.

The International AIDS Society has announced the plenary speakers for the International AIDS Conference, to be held this summer in Washington, DC.   Alice Welbourn, a woman with HIV and a member of the Athena Network steering committee, has written an important letter to the President of the IAS pointing out that:

·      more women than men in the world have HIV

·      In countries with the highest sero-prevalence, young women are most affected

·      women of color in the US are particularly affected

Yet... amongst the IAS's roster of more than a dozen plenary speakers, she notes there are no women living openly with HIV; no young women; and no women of color from North America.

 

I would add that while I know at least one of the speakers is living with HIV--Phill Wilson, from the Black AIDS Institute--NONE of the speakers announced in the IAS press release are identified as people living with HIV.  More invisibility.

 

The IAS claims to respect the GIPA principles (Greater Involvement of People living with HIV/AIDS), which were inspired in large part by the Denver Principles. 

 

But perhaps they misunderstand and think the "I" in GIPA stands for "Invisibility" instead of "Involvement"?

Rex's story is a highly personal one, but it is relevant to all of us who are concerned about an eroding respect for patient autonomy and individual rights at the altar of poorly designed and administered "public health" interventions.  When Rex sought treatment for depression from a Sexual Health and Aids Counseling Team, attached to a local AIDS medical unit, he received a rude awakening.

The focus of the story is the unintended consequences that may occur when public health agencies co-opt therapists to act as sex police and HIV status is linked to criminal law. In this story the results are counter-productive for the patient and, I believe, for public health itself.

Rex was having an honest discussion about his life, including his sex life, and said that he did not always disclose with sex partners that he had HIV. Here's what he described happened next:

"From here the session fell apart. She [the psychologist]revealed she was obliged to terminate the counselling and address safe sex and disclosure. I countered that I didn't believe this was a significant issue, that I was well informed, informed enough to know about risk reduction.

I pointed out I'd come voluntarily to see her, principally about depression and I didn't want to be diverted away from that, believing that depression was more important. The meeting foundered. She announced that I was placing other people at risk of HIV infection and she was obliged to report me to Queensland Health's Panel that oversees the Protocol. She waved the Protocol at me, a red/orange document that shouted its warning with its colour.

I sensed something was going very wrong. I said I didn't believe I had placed anybody at risk, noting that I'm an exclusive bottom who is not pumping infected cum up anyone's arse and that I've been able to maintain an undetectable viral load for years and have exemplary adherence with taking meds. None of this mattered.

It didn't matter that most of the sex I have is sero-sorted, with other poz guys or that the amount of undisclosed and unprotected sex was only a small part of the sex I've had and that if there was any risk it was hardly "serious". But it had occurred. And I would be reported."
Rex's story gets worse and you can read the entire article here.  It's sharp and moving and darkly entertaining.

But whether you click through to read the entire saga or not know that his experience was unacceptable and unjustified. Unfortunately the "The Protocol", or something like it, under whatever name, may be coming to your country, your state, your community and your life next.