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What’s missing from World AIDS Day

AIDS

I wrote this post at OpenLeft.com exactly three years ago today, and am republishing it this morning with an update because there is little difference between how the Administration and national LGBT advocacy organizations chose to mark World AIDS Day in 2008 and how they choose to do so today.

In the meantime, vaccines do not make themselves, but finding one remains the best hope for a cure. Prevention must one day become eradication. Please consider volunteering for an HIV vaccine trial. And if you are not eligible, consider asking a friend, family member, or colleague to do so. We have made great strides over the last year and it must continue. More details below, or you can go to hopetakesaction.org for more -Adam)

By Adam Bink

Credit: Karen Ocamb at LGBTPOV.com (marking the 30th anniversary of the discovery of HIV)
ALC ribbon 30th anniversary

I’ve been sitting at my computer all morning, reading through the advocacy discussion on World AIDS Day. Usually on these kinds of commemoration days there is an overemphasis on quick internet activism- a Facebook status update is all I expect out of lots of friends, both gay and straight- and an underemphasis on offline action.

Today is no exception, but it’s especially disappointing because of the lack of emphasis on vaccine trials. Allow me to get a little personal on you.

I come from a background of volunteering. My mom was a team leader for the United Way Day of Caring, so I participated each summer. Before I could not do so anymore because of the ban on blood donations from men who have sex with men, I donated blood at the Red Cross every chance I became eligible again- literally gallons’ worth. My grandpa spent the last few years of his life needing blood transfusions, so I became aware of important it is and how many shortages there are.

In that spirit, and because of how HIV/AIDS affects my community and friends, four years ago I participated in an HIV vaccine trial through the National Institutes of Health. The trials were no secret- NIH advertised in Metro Weekly, a local LGBT magazine, calling for volunteers. It wasn’t difficult- when I had a visit (I had a total of about a dozen, I got up a little earlier so I wouldn’t miss work and hopped on the DC Metro a couple of stops to the NIH campus. I did a few visits of background medical counseling and routine blood tests- the same you would get at a yearly check-up with your physician. The vaccine was given in separate doses- all with careful monitoring of symptoms. The extremely courteous, friendly, professional medical staff called regularly to check up and make sure I was okay. I was given a chart to monitor any reaction I had- which was none. The follow-up visits consisted of simple blood tests and inquiries on any symptoms. It was not, by any stretch, a harrowing experience, and I was generously compensated for my time. And I’ve been tested multiple times since then and am still HIV-negative. In fact, I’ve since gone back to participate in an avian flu vaccine trial, and am currently enrolled in a trial to help find a cure to chikungunya, a mosquito-borne disease common in Africa and Asia. Each time, the NIH physicians and staff are professional, caring and courteous.

I didn’t tell many people about my participation at the time, and those I did tell, I was shocked at the concerned reaction- even by physicians I know, even by people I know who lost family to other diseases with no cure, and have lamented to me how there is no vaccine. Yet when you say “I’m volunteering for a vaccine trial,” people ask “why must you? Let someone else.”

But the trial vaccine cannot cause HIV infection. From the NIH website set up for volunteer intake (emphasis theirs):

Q: Can a study vaccine cause HIV infection?

It is impossible to get HIV infection or develop AIDS from experimental vaccines. They are not made from live HIV, killed HIV, weakened HIV, or HIV-infected cells. The investigational vaccines in this trial cannot cause HIV infection.

You could even be receiving a placebo, and the studies are independently-reviewed. More to the point, though, I was left wondering at the public approach to HIV/AIDS and other diseases. How are we ever going to get past prevention and onto eradication if we don’t get past the perception that these vaccines just make themselves, and volunteering isn’t critical?

You see the same approach today. On Twitter, Join Red, which is a corporate-sponsored organization designed to raise awareness, as of this post makes no mention this morning on Twitter with over 1 million followers of volunteering to find a vaccine or even getting tested, yet remarkably talks about “the end of AIDS”, a new quilt and Bono’s media appearances. The Obama administration’s website, AIDS.gov, has an entire section devoted to how one can use new media on its homepage, but if you want to find information about the government’s own research, driven by tens of thousands of volunteers, you have to do some serious digging to find this article, and even then there is no real call for trial participants. I just received a copy of President Obama’s upcoming speech at George Washington University, and it makes no mention of how exactly we will find a cure. Among advocacy organizations, NGLTF makes no mention, and HRC asks you to upload a photo. Not a photo wearing red or holding a red ribbon or a sign about HIV/AIDS…just a photo.

Now, I’ll be the first to say I’m no expert on epidemics, and I know issues like getting tested, using prophylaxis such as condoms, combating stigma in the African-American community, and syringe exchange programs are critically important. I also know HIV/AIDS vaccine trials have had limited success- although no more so than lots of other diseases. But it simply doesn’t make any sense to talk about prevention of diseases through pap smears and mammograms and HIV tests, and not ask people to volunteer to try and end these diseases permanently. At some point, prevention must become eradication.

We’ve achieved a cervical cancer vaccine. Every winter, everyone flocks to get a flu vaccine to the degree that there’s always a shortage. Every child gets an MMR vaccine. Hepatitis B. Polio. Chicken pox. On and on and on. Americans know how critical vaccines are. What seems to be be unknown is that these vaccines do not come out of thin air. They come from people volunteering to help develop them so that the rest of our country, and the world, can live longer. People bravely volunteer to fight overseas in the name of saving lives. Why don’t the rest of us bravely volunteer to save lives here at home? It’s time to start volunteering, and for our leaders to start calling for volunteers.

If you are a man who has sex with men, HIV negative and between 18-45 years old, please consider becoming one of the tens of thousands of vaccine trial participants (there are a few other requirements you can read about on NIH’s website). If you aren’t, you can still help — please consider passing along trial information over e-mail, social media or word of mouth. There is NO risk of infection from the vaccine and participants are well-compensated for their time. There are trial clinics all over the country. If you have any more questions, many answers can be found at HopeTakesAction.org or you can feel free to e-mail me at adam at couragecampaign dot org.

We will never get eradicate these diseases if we don’t and step up individually. Mark World AIDS Day by taking a giant step forward towards a cure.

Update: Top ten myths about HIV Vaccine research.

10 Comments

  • 1. sfbob  |  December 1, 2011 at 7:53 am

    Oh hey! I'm in that picture! Somewhere in the middle of the ribbon there.

  • 2. Gregory in SLC  |  December 1, 2011 at 8:10 am

    On my mind today too : |
    http://www.cityweekly.net/utah/blog-27-6729-the-a

  • 3. Ronnie  |  December 1, 2011 at 8:45 am

    Subscribing & sharing…….. <3…Ronnie

    [youtube wHUKbSIGDAI http://www.youtube.com/watch?v=wHUKbSIGDAI youtube]

  • 4. Joe  |  December 1, 2011 at 8:48 am

    Thank you

  • 5. Bob  |  December 1, 2011 at 11:28 am

    Happy World Aids Day,,,,,,, today I begin year 25 after diagnosis,,, thanks for the post Adam,, and yes please to anyone who can participate in any trial,,,

  • 6. Fluffyskunk  |  December 2, 2011 at 6:37 am

    With all due respect to HIV/AIDS victims, how is this in any way relevant to marriage equality?

  • 7. Fluffyskunk  |  December 2, 2011 at 6:40 am

    With all due respect to HIV/AIDS victims, how is this relevant to marriage equality?

  • 8. Adam Bink  |  December 2, 2011 at 7:04 am

    From time to time, this blog can be about issues affecting the LGBT community broadly.

  • 9. Bob  |  March 4, 2012 at 6:40 pm

    http://www.thefilmcollaborative.org/films/wewereh… here's a great film telling the story of the epidemic and how it affected the gay community in San Fran,, how they came together to deal with it,,, sad, but true,,,,, very worth watching

  • 10. Adam Bink » Blog Ar&hellip  |  April 16, 2012 at 4:15 pm

    […] What’s missing from World AIDS Day, Prop8TrialTracker (originally published at OpenLeft), December 1, 2011: This is a piece getting into how leaders in the movement to end AIDS too often ignores work to find a cure through developing a vaccine, particularly on the annual World AIDS Day, and instead focus on prevention/treatment in contrast to other movements such as efforts to end breast cancer. […]

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