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 became sexually active, 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, two 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.
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 breast cancer, another disease with no cure, and have lamented to me how there is no vaccine. 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. 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, you can turn your update status red by tweeting #RED. But as of 10:45 AM EST, the sponsor, @joinred, which is run by Nike and has over 850,000 followers, makes no mention of volunteering to find a vaccine or even getting tested. The Obama administration's new website, AIDS.gov, has an entire section devoted to using new media, but no mention of the government's own NIH vaccine trials- which, as I discuss below, are still calling for volunteers. I can't find it in the HIV/AIDS Programs, National HIV/AIDS Strategy, HIV/AIDS 101, or Prevention sections of the website.
President Obama's proclamation this morning doesn't call for volunteers. And this is the federal government's own program we're talking about! In the LGBT world, I don't see it on the Human Rights Campaign's blog post titled "Marking World AIDS Day". NGLTF, in a statement, mentions the need for treatment access, comprehensive sex ed, combating discrimination, syringe exchange programs, but nothing about vaccine trials.
Now, I'll be the first to say I'm no expert on epidemics, and I know items like getting tested, combating stigma in the African-American community, and syringe exchange programs are 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.
We've just 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. 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 bravely 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 volunteering (there are a few other requirements you can read about on the website). There are trial clinics all over the country (and the compensation is really good too). 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.