At the Front Line Against AIDS: A Patient Advocate's View

At the Front Line Against AIDS: A Patient Advocate's View

06.08.11 | By Kate Connors

David Mixner has been a long-time human rights and HIV/AIDS patient advocate. He took a few moments to speak with me about how the disease has changed from a patient perspective over the last 30 years, and it was a truly human reminder of how much our progress really means.

How did you become involved in AIDS patient advocacy?
I knew the fourth case of AIDS that was diagnosed in Los Angeles, so I've been at this for all three decades, pretty much from day one. Dr. Joel Weisman and Dr. Michael Gottlieb, two of the earliest doctors to treat AIDS patients, were also two of my closest friends I remember sitting around the dining room table one night saying, "What the heck is happening?" Looking back at the 1980s, what I think will never leave me is that we, as a community, were really and totally and completely isolated. It was a nightmare.
What was it like as the disease progressed?
It was like being in a war for me, wondering if anyone back home knew what we were going through. I belonged to a support group of 30 gay men in the late 1970s, all professional men, and I'm the only one that didn't die of AIDS, all before they turned 40. I gave 90 eulogies in two years for young men under the age of 40.
So when you look back at all of that and see where we are today, with protease inhibitors that allow people, by and large, to live with HIV? It's incredible.
What sort of changes have you seen in how the world battles AIDS today?
We've come an extraordinarily long way. I believe, and hope, that we're on the verge of breakthroughs in studying cures and vaccination. We have people working together who were fighting back then. We have partnerships that are active and vibrant. We've been able to open up some of the more isolated places in the world to treatment and care.
But, we still have 25 million people carrying the disease, so finding a cure and finding an answer to this is still very important. The difference from other diseases is that this is transmitted. You can't give me cancer, you can't give me diabetes, but you can give me HIV.
What are the challenges that remain?
I still think we have some problems to deal with. Education remains important, but we have to move toward a different sort of education. Before we needed massive programs telling people how not to get the disease. But the problem is that we need to remind young people that despite the remarkable treatments that exist, there still is no cure. They grew up knowing about AIDS and they think it's no big deal because they haven't seen anyone sick with it. So the urgency that this is not something to take casually is an important education program.
Second is that we appear to be on the verge of promising news and major breakthroughs. Now is not the time to cut back on R&D, both private and public. We have to make sure that the companies that are heavily involved and invested have the ability to continue and are not discouraged from creating the promising therapies and vaccines that we all are looking for. And, it's certainly not time to cut off funds to university programs with invaluable data both for private and public research.
America could become the healthcare provider of this planet and in the process of this effort create thousands of jobs, fund universities, give us the R&D spurt we had in the space race in the 1960s. AIDS research could actually become an area of economic growth for America.
And if and when we get those breakthroughs? What then?
One of the important issues is that given the unique nature of this disease and the equally unique treatment options and care available, decisions about care must be made between a doctor and a patient. We've got to be careful with programs that would interrupt that special relationship. Why is it special? Because we haven't found a single pill that deals with all people with HIV. So one drug might work for me, but not work for you. It's a question of hit and miss many times. Sometimes it's finding the right combinations so the patient isn't made sicker and remains a productive citizen. So it's really important that we understand that we need options. We have to have options or people will die. Those options have to be decided by the doctor.

More On PhRMA — powered by PhRMApedia