Sean Strub

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.

Last week Nick Rhoades, Robert Suttle and I attended a meeting of the UNAIDS Programme Coordinating Board (PCB) in Geneva, Switzerland. 

Nick and Robert both spoke eloquently about their criminalization experiences. Robert's Louisiana driver's license has the words "SEX OFFENDER" in red capital letters underneath his photograph. He wore it on his jacket, to prompt conversation and make the point about how people with HIV are being criminalized and stigmatized in the U.S. 

I wasn't as eloquent as either Robert or Nick, but I was able to make the point about how criminalization statutes are creating a viral underclass in the law.

Here is a brief trailer from the documentary I am making about HIV criminalization. Long road ahead--and lots of funding needed--but this is a good start and helps people interested understand the critical issues at stake.

Since the earliest days of the HIV/AIDS epidemic, we have known that social stigma has been a major obstacle to accessing care and implementing effective HIV prevention policies.  Even as fear of contagion from casual contact has lessened, profound stigma persists.  People with HIV continue to face pre-judgment, marginalization and discrimination.  Severe misunderstandings persist about the actual routes and actual risks of HIV transmission. 

 

Earlier this year in Oregon, a city commissioner ordered an eight million gallon outdoor reservoir drained, after a security camera caught someone urinating in it.  He said the $38,000 cost was justified because of concern that diseases like HIV could be in the urine.   A Montana legislator in testifying in favor of that state's death penalty, noted that there are "new ways" to kill people. She said the death penalty in Montana was necessary to stop prisoners from making "little paper airplanes" and smearing them with spit or blood or urine or feces and throwing them at prison guards, attempting to kill them.

 

This kind of ignorance is stigmatizing.  And stigma discourages people at risk from accessing care--including testing for HIV--and it discourages people who know they have HIV from disclosing that fact to potential sexual partners and others.  Much of this stigma is based in homophobia, racism and sexophobia.

Nothing drives stigma more powerfully than when government sanctions it through the enshrinement of discriminatory practices in the law or its application, like Jim Crow laws or apartheid.   When the government statutorily stigmatizes, it is a collective statement of the society.  It says this group is "less than".  It sets an example for communities, encouraging stigmatization and discrimination.  And it is wrong.

 

Yet that is exactly what has happened with HIV.  We have created a viral underclass in the law, an underclass of persons who rights have been judged to be inferior to others, especially in regard to their right to sexual expression.

 

This viral underclass is a result of HIV criminalization, when people who have tested positive for HIV experience punishment, or a more extreme punishment, as well as a presumption of guilt or wrongdoing in a host of settings and for a host of practices that are, for those who have not tested positive for HIV, unremarkable. 

 

Having different sets of laws for people with HIV is the most extreme manifestation of stigma.  Thirty-four states now have HIV-specific criminal statutes.

 

It saddens me to say that, right now, we sit in the epicenter of this epidemic of injustice.  There is no state in the country that has criminally prosecuted a greater percentage of its citizens with HIV--for something that should not be a crime in the first place--than has Iowa.

 

There are about 2,000 people with HIV in Iowa; nearly 2% of them have been prosecuted under Iowa's so-called HIV Criminal Transmission statute.   I say "so-called" because the title of the statute is inappropriate.  Criminalization prosecutions typically do not involve HIV transmission.  In fact I was told last night that possibly just one of the cases prosecuted in Iowa was HIV actually transmitted. 

 

It pains me to be critical of Iowa, because I am a native Iowan.  I grew up in Iowa City and have deep roots here; I suspect I share an extraordinary pride in Iowa with many of you in this room.  Even after living in New York for more than three decades, many of my friends there think of me first as an Iowan. 

 

So when I talk about criminalization in Iowa, it comes from an Iowan who cares deeply about his home state and is hopeful that Iowa's progressive tradition of civil rights and social justice leadership will ultimately prevail and erase this ugly stain on our history. 

 

When stigma is so great that it is even enshrined in the law, it shouldn't be a surprise that people with HIV internalize and accept this judgment, perpetuating a perception of those with HIV as toxic, highly infectious or dangerous to be around.

 

This has serious adverse ramifications for people with HIV, both in terms of their health as well as their civil liberties.  It makes HIV prevention much more difficult and contributes to further spread of the virus rather than slowing it. In short, HIV-related stigma is a serious public health and civil liberties issue. 

Remember the lively community discussion concerning Roger England's article criticizing UNAIDS several years ago?  David Egilman, Tess Bird, Fernando Mora and Nicholas Druar have just published an editorial "The "Perverse" Effects of Aid:  Addressing the Social and Environmental Determinants of Health, Promoting Sustainable Primary Care, and Rethinking Global Health Aid". 

Despite the long title, the editorial is easy to read and provides a helpful backdrop to the ongoing debate over the best approach to global health issues, including HIV/AIDS. 

The editorial starts with a startling statement: "There are Haitians who see a positive HIV test as the easiest--and often the most straightforward--path to survival."

I strongly recommend reading the editorial and I especially hope it gets read by all those who felt strongly about England's article a few years back.  My thanks to Joseph Sonnabend, MD, for bringing it to my attention.