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We the LGBT? What About Us With HIV?

| 10 Comments
I recognize and appreciate the good intentions of the LGBT community leaders and executive directors of AIDS organizations involved in making the "We the LGBT" video and producing such a statement. I believe this reflects a genuine recognition that the LGBT community leadership needs to reengage in the epidemic in a way unlike its track record in recent years.  

But, good intentions aside, an important key to the problem we find ourselves in today is, to some extent, evident in this video, statement and the process that produced them.

I don't know all of the people in the video, but I am fairly familiar with the leadership of positive LGBT people across the country. It was a mistake not to include anyone in the video who is specifically identified as someone living with HIV and recognized as an advocate for people with HIV. Amongst the signers of the statement not in the video, the only person I recognize as such is Phill Wilson. I don't know all those featured in the video or listed as a signer to the statement, so perhaps there are others but they aren't identified as such.

Institutionally, the absences are even more striking. There are five national networks of people with HIV in the U.S. that were created by and are run/controlled by people with HIV (the Positive Women's Network - USA, the North American regional affiliate of the Global Network of People With HIV, the International Community of Women with HIV/AIDS, the Campaign to End AIDS and the Sero Project).  To my knowledge, this effort didn't include any substantive outreach to any of those organizations.

When I first saw this statement, I forwarded it to several other people with HIV with long track records as activists; their response was the same as mine. It feels like, to a large extent, those of us who have the virus and speak for ourselves are too often seen as something apart--a community to be talked about, organized or strategized around, but seldom engaged directly.  Even the meeting at Creating Change that led to this video and statement didn't involve the networks of people with HIV in its planning; the agenda was pre-determined.

With all due respect to AIDS service and policy organizations, and the many dedicated, important and respected people with HIV who work in some of them, engagement with those organizations does not necessarily reflect the perspectives and priorities as expressed by the communities of HIV through their networks.

It is important to recognize the vital role of networks of people with HIV, because they enable people with HIV to define their own agenda and select their own spokespersons and leaders, as called for in the Denver Principles manifesto (written 30 years ago this month).

The Sero listserve has become a lively forum for discussion on these issues. Anyone interested in joining that listserve is welcome to do so by emailing info@seroproject.com.

***

The Sero Project is a network of people with HIV and allies fighting for freedom from stigma and injustice. Sero works to realize the vision of the 1983 Denver Principles manifesto to empower people with HIV and combat HIV‐related stigma, discrimination and criminalization. For more information, visit seroproject.com, like Sero on Facebook at facebook.com/TheSeroProject and follow on Twitter at twitter.com/theseroproject.



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Comments on Sean Strub's blog entry "We the LGBT? What About Us With HIV?"

I am daily offended by the omission of older white women and black and white straight men from the articles written, from on going studies and from the big picture. I've been infected since early 1987. I've had to beg for the hetero community to be recognized as co-ed with co-ed support groups and recognition. We are out here on our own. I stopped doing panels, drug studies and overall ASO support activities because I felt I was intruding. AIDS is not about LGBT. It is about people.

It's a pretty piss-poor video statement.
Lots of self congratulation from activists who would just like those pesky pestidential PLWHAs to disappear and shut up.

It is shocking and disappointing that the LGBT movement--which was built, driven and funded by gay Americans' and our supporters' responding to the injustices of the AIDS epidemic--has turned itself into a single-issue lobby focused on marriage equality. I, and others, have written about the little-more-than-lip-service paid by LGBT organizations to supporting appropriately proportionate resources--e.g., prevention--to be directed at the gay/bi men (especially young African-American men). Never before have the accusations of racism against the organizations--the public face of the "movement"--by LGBT people of color rung truer than they do today. Privately insured, middle-class white gay men--such as those in the national LGBT groups--have "moved on" from HIV as a major concern for gay America. You'd almost think they were all Republicans by the way they have pushed the issue as far away from themselves as possible since their own lives are no longer in such imminent danger as the lives of young gay/bi men living with or at risk for HIV/AIDS.

Well said Sean!

I noticed when working as an HIV-positive advocate in the early 90s that those of us with the virus got sent out to speak on how to avoid getting infected, while HIV-negative people got sent to speak on living with HIV. I guess not much has changed in 20 years.


HIV policy is being led by people that use fear and are ashamed.

The truth is most HIV prevention funding is used to finance the campaigns that are driving the hate and fear against positives that pushes them underground and leads to both the invisibility and instability that is making transmission rates go up among the newer generations.

Organizations like Gay Men’s Health Crisis and the like seem irrelevant and only a legacy out of a once vital and vibrant social movement. HIV services provision has become bureaucratic and commercialized. These "community-based" organizations are not visible in bars, gyms, sex parties or even the internet. So exactly what gay community is being reached? Where´s the proactive outreach to non-activists? Where´s the contacts with what are our current gay icons, mostly drag performers who hold the bully pulpit (or at least the microphone at the stage)?

HIV treatment and prevention has been overtaken by corporations, pharmaceutical companies and doctors. For all their knowledge, there is no substitute for the experience of positives themselves. Outdated perspectives, conflicts of interest and business and professional public health and psychological bias go unchallenged.

The paternalistic discourse that fails to break with heterosexual tradition and negative-centric interests is not that shrouded. How would gays feel if most societal discourse as regards male homosexuality was about anal penetration being painful?

Thank you Sean. You are 1000 percent correct.

Hi Sean:

Do you have any access to information that you could share with me. I am currently on Truvada and Issentres. My CD4 count is 1,150 (really amazing) and my Viral Load is ZERO or untraceable. So my question is as follows:

1. Can someone have the HIV virus - oral and blood tests indicate that my partner is NEGATIVE. However, I was and always have practices SAFE sex. After meeting my partner he exposed me to HPV and Genital Warts and 3 months later I became HIV+. Is it possible that my partner is a carrier and due to the HIV virus being measures in parts per million - can people carry the HIV virus and not know they have it? If technology measured in parts per billion would the rate of HIV detection climb? I read somewhere that someone can carry the HIV virus for 10+ years or more and all the current tests would indicate that HIV is negative?

Any information you can provide would be appreciated.

Thanks
Tim

Timothy, congratulations on your undetectable viral load and amazingly high CD4 count. A person can definitely have HIV and be infectious and not test positive themselves, generally during the "window period" between infection and development of antibodies that will show in their blood test. However, there's also a phenomenon known as "exposed sero-negatives" people who do not show antibodies but in whose blood it can be determined they were exposed. I haven't read any evidence that such people are infectious, but this is complicated science that involves the immune status and susceptibility of the parties involved, the amount of virus to which one is exposed, etc.

Genital warts are generally the same thing as HPV. I don't know how old you are or how long you have been sexually active, but very large majorities of gay men have been exposed to HPV and at various times carry strains of HPV but may or may not be infectious. The rate of HPV amongst gay men with HIV is even higher. You might never have had genital warts, to your knowledge, prior to having contact with your partner, but that doesn't mean you weren't exposed or didn't carry the virus. Is it possible you acquired HIV before meeting your current partner?

I've never heard of anyone carrying the virus for ten years and testing negative throughout that time frame. But the science of viral and antibody testing is much more complex than the "yes/no" or quantifiable number we get on a lab report.

You might go to aidsmeds.com and pose some questions there and you'll surely get some ideas and thoughts from others, including people who may be more familiar with the current science on these points than yours truly.

I am also appalled that the production of this video did not include outreach to any people or networks who identify as PLHIV.

This appals me even more given that I am an injection drug user (IDU). I was not infected via that route; I was infected sometime in the mid-80s via sex. But I do use crystal meth regularly and my preferred way to get high is intravenously. I also run a street-based syringe exchange and overdose prevention program, Lee's Rig Hub, in Minneapolis.

I am a member of the International Network of People who Use Drugs (INPUD), and am fortunate to represent INPUD at the international level on the World Health Organization's Civil Society Working Group on Revision of ARV Guidelines, which were recently rolled out in Kuala Lumpur. I also represent INPUD and PWID on the Global Network of People Living with HIV's KPLHIV Working Group as the IDU and serve on the GNP+ Board of Directors.

Any and all future responses, videos and statements by leading LGBTI advocacy groups and networks MUST include HIV+ men and women who inject drugs. Needle exchange and not sharing any works used to fix drugs are the single most effective ways of HIV transmission protection, outside of lifelong and unfailing commitment to abstinence.

Continuing to stigmatize our brothers and sisters who enjoy using drugs, as well as those who want to stop or lessen their drug usage through treatment, is doing absolutely nothing to ultimately reverse transmission rates. It does nothing more than heighten stigma directed at us from the outside as well as amplifying the self-loathing that many men and women are self-medicating themselves against to begin with as those feelings relate to the stigma of identifying as anything but heterosexual.

LGBTI networks are missing a golden opportunity to educate men and women about alternatives to injecting by promoting the smoking, snorting or booty bumping of crystal meth as means of getting high while avoiding the risks of injecting, including the possibility of having to share syringes.

Lee Hertel
Lee's Rig Hub -- "We've got everything but the dope"
Minneapolis

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This page contains a single entry by Sean Strub published on June 3, 2013 4:04 PM.

Larry Kramer's Kissing Us Again! was the previous entry in this blog.

Good News From Congress (No kidding, I mean it!) is the next entry in this blog.

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