01 December 2006

What are you wearing today?

Support World AIDS Day

Today, December 1st, is World AIDS Day. Personally, I think it should be World AIDS Awareness Day, but won't quibble about semantics.

It's an annual reminder for me. Too easily, too frequently in my life, I skate through days, weeks, even months without ever stopping to think about the terror that is AIDS. I could, now that I'm thinking about it, spout statistics or case studies of countries in Africa, or point everyone to Respectful of Otters - written by a psychologist in an AIDS clinic - but Rivka's been a tad preoccupied with L'il Critter lately to be posting that much.

Instead, for those of you who don't know, I'll tell my tale. It's not terribly dramatic or frightening or brave or even sad. I've been extraordinarily lucky that none of my close family or friends have contracted HIV or died of complications related to AIDS. But there was a time when I was much more active in the AIDS service community. A time when I was living in Seattle, in a monogamous heterosexual relationship. A time when I wanted to do something more to help than assist at fundraisers for the Northwest AIDS Foundation (now, the Lifelong AIDS Alliance, created when NWAF and Chicken Soup Brigade merged in 2001).

A time when I volunteered, through the Fred Hutchinson Cancer Research Center and the University of Washington Hospitals, to participate in a double-blind, experimental HIV vaccine trial. The vaccine being tested had completed all stages of animal testing and they were recruiting for people to participate in an 18-month Phase I human trial. This is the first human testing for any drug, and they're primarily looking to evaluate the safety of the drug when given to healthy subjects.

I was an ideal candidate for them - I had none of the risk factors associated with contracting HIV - which was rare given that many people interested in participating are interested because HIV and AIDS has direct implications for them or their loved ones.

HIV vaccines aren't like typical oral or shot vaccines. In most regular vaccines, the vaccine is actually a severely weakened form of the virus itself - strong enough to elicit an immune response, but too weak to mount an attack on your system. Because HIV is so dangerous, though, vaccines have to be constructed differently. The particular kind of vaccine used in the trial I was in was a DNA based vaccine where a small piece of HIV DNA was created - a piece without the capability to reproduce itself, but hopefully with enough of the genetic characteristics of actual HIV to prompt my body to start producing antibodies.

The trial, in and of itself, was simple. It involved several blood draws and four injections of either vaccine or placebo. Neither my clinician nor I knew whether I would get vaccine or placebo - that's the double-blind part - until the study was unblinded at the end. Blood draws were usually multiple tubes drawn from my arm. Tubes were sent to various research centers around the country, including UPenn and Johns Hopkins, where they maintained living blood lines for each of the participants. My blood was tested at each draw for signs of antibodies using a standard HIV antibody test, and also for signs of the virus itself with a Western Blot test. The hope was that the vaccine would first and foremost not be dangerous or have any unbearable side effects and also produce an antibody response independent of exposure to the virus.

At the end of the 18 months, I was getting ready to leave Seattle for graduate school in Chicago. I found out during my last visit with my clinician that they wanted to give participants boosters of the vaccine and continue monitoring them because immune response had been less than what they'd hoped for. Because there is not an HIV Vaccine Unit in Chicago, however, I had to withdraw and did not get the booster.

Almost two years later, I got an email from my clinician with the unblinding information. I'd received 3 mgs of the Apollon DNA vaccine on 01/06/99, 02/03/99, 03/03/99 and 06/29/99.

Practically, there's been no lasting effect on my physical person from participating in the trial. The only point of any concern is that it's not known if, for some bizarre physiological reason, my body may at some point start producing antibodies in response to some bit of the vaccine that was dormant, but that's a very far stretch. All the same, I have an ID card from the National Institutes of Health that identifies me as a participant in an experimental vaccine trial should I ever test positive on an HIV antibody test. At that point, NIH would come in and run a Western Blot (which tests for the actual virus, not just the antibodies and therefore usually takes longer to get results from) to ensure that I don't actually have HIV. But, as I said, the possibility is so small it's almost not worth mentioning.

Psychologically, the effect has been somewhat muted. Many people react to hearing this tale with something akin to awe tinged with a fair amount of fear. I don't see my participation as anything particularly brave or outstanding. I wasn't in any danger, I was just one of many participants nation-wide in a much larger study, in an even larger drug-testing system. Even if, years from now, a viable vaccine is found that can trace some portion of it's evolution to the one I received, my contribution was infinitesimally small. *shrug*

So why then, you may be wondering, am I bothering to talk about it now? Part of it is reminiscence on my part.. Part of it regret that I'm no longer active in the AIDS service community.. Part of it is to demonstrate that you don't have to be directly effected by something to work toward resolving it. And still part of it I can't quite explain, other than that however small, it stands as my most significant contribution to fighting the spread of HIV and AIDS.


Two Sirius said...

Call it infinitesimal if you want, but you participated. That's more than most of us can say.

Michele sent me!

Cathy said...

Thank you!

dread_ex said...

Thank you for participating in the study. Someday it may have a huge impact on the world.

Carmi said...

I call it bravery. You stepped forward when so many others would not. Because of you, a vaccine and a cure will be found sooner rather than later.