A bunch of things are converging this week in my head. Here goes.
On October 15, 1985 I was a guest on The Oprah Winfrey Show. It was in Chicago then, just before she went national. Just before. I had never heard of her before going on the show. Of course since then, no one has not heard of Oprah. Her show, her name and everything associated with her became legend. This week, she retired her national show. For me, it was a passing – not because I watched her show – I never even watched the tape of the one I was on. But because it represents a different time for me, especially in light of some of the other events of this week.
The show I was on was one about AIDS – in fact AIDS discrimination to be precise. I was the Director of Legal Services at the Gay Men’s Health Crisis (GMHC) in New York where I had thousands (literally) of clients with AIDS, many of whom had lost their jobs, their homes or were refused services because of their status as a person with AIDS (PWA).
I was to appear with AIDS activist Bobby Reynolds and Ryan White, a young Indiana school boy who had been kicked out of school for having AIDS and who eventually had to leave the town in which he lived in Indiana because of discrimination. But Ryan White got sick and could not appear, so instead there was a woman named Amy Sloan, a dental hygienist, also from Indiana, who contracted AIDS through a blood transfusion. Two days earlier day after she found out she was pregnant, she found out that she had been infected with the virus. (Baby was born ok.) When Bobby Reynolds was diagnosed, there were only 30 cases in San Francisco of this new disease. These were all some of the first persons diagnosed with AIDS, one a gay man, one a heterosexual woman, and one a child. The assistant to Oprah was another gay man, Billy Rizzo, who I met in college and who contacted me to ask me to appear on the show. The day after the show, October 16, 1985, I met my partner Joe. He too died of AIDS in 1987.
I bring this up for a number of reasons, many of which came together today. First of course, Oprah’s show retired. But there are other milestones right now.
On June 5th, it will be a 30 year anniversary of the first news articles about the outbreak in a small article in a newspaper. The new disease was unheard of and did not even yet have the name of AIDS. In 1981 such a thing was peculiar to say the least. A new and fatal disease that could be passed on to others by the act of making love. It was not conceivable.
Aside from the fact that we are marking the 30th year of the AIDS epidemic, it also happens that within the last few days, two new drugs were approved to treat Hepatitis C. Hepatitis C is caused by a virus. AIDS too is caused by a virus.
One drug produced by Merck called Victrellis is a protease inhibitor. And another produced by Vertex is also a protease inhibitor . Protease inhibitors were not something known in 1985 when Oprah and I sat down to chat. Protease inhibitors were first introduced to treat AIDS in 1996, sadly not in time for any of the people on Oprah’s show that day, her assistant, or my partner (Amy Sloan, Bobby Reynolds, Billy Rizzo and my partner all died not long after that show). But today, protease inhibitors are part of a drug combination that keeps many people with HIV from dying. In fact, unlike those protease inhibitors that treat HIV infection, the protease inhibitor from Vertex and from Merck actually appear to cure many people infected with Hepatitis C, a condition that has a high mortality rate and which affect millions of people.
Recently it was published that by putting people with AIDS onto anti-retroviral therapy, the treatment is not only for the disease, but in fact, can be a means of prevention as well meaning that fewer people in the world, if given treatment, could pass the disease along.
I bring all of this up for the reason that it is such a confluence of the week’s events. Oprah’s show going off the air – a show that represents so much for me early in the AIDS epidemic, protease inhibitors coming into play – something not even heard of before the mid 1990s and which made such a difference in the epidemic once introduced into the market. Then there is the real possibility that the FDA’s budget is being cut by over 11%and there have been reports that funding for AIDS treatment access programs known as ADAP programs in the United States face growing waiting lists due to lack of funding and even funding cuts. ADAPs mean that people can get access to treatment that is life saving not only for them, but for those to whom they might otherwise transmit the virus.
Protease inhibitors were built on the backs of virology. Virology was built on the back of HIV. Treatments for HIV were built on the backs of AIDS activists who prodded the federal government in general and the FDA and NIH in particular to speed up research and lessen the bureaucratic hurdles for new treatments. As a result, lives were saved. While they are not, there are Bobby Reynolds and Amy Sloans and Ryan Whites and Billy Rizzos walking around today who otherwise would not be here would it not for the combined efforts of activism, science, perseverance and the willingness of a Congress to fund research and prevention.
Everyone on that show except for me and Oprah are gone. But AIDS has not died. There is no cure.
The picture is more promising for those with Hepatitis C, thanks to the research and approval by the FDA of new treatments. But if it hadn’t been for AIDS research, and AIDS treatments, also reliant on protease inhibitors, then maybe this would not have come to pass. And as was demonstrated this week, research into HIV taught us so much about the immune system and virology that new treatments for other diseases have emerged. Who knows what else can come from it? The blood, sweat and tears of those in the 1980s have yielded unforeseen benefits.
Funding is tight. But it should not be so tight that we turn our backs on the success of the past and fail to see a vision for the future. Lives depend on it.
When I got to the studio in Chicago, Oprah met in Green Room.
“Nervous?” she asked.
“No.” I said.
“Want makeup?” she asked.
“Definitely.” I said.
She took me over to the makeup guy and he asked what I wanted in the way of help. I pointed to Oprah and said, “I want to look that good.” We all laughed.
Bye O. Thanks for doing that show so long ago – it was brave stuff in a really, really different time.
Great posting Mark. Thanks so much for sharing. You’re absolutely correct about the innovation and unexpected benefits that come out of basic research. NASA is another example of same that also faces the budget axe.
Your anecdote notwithstanding, I am thrilled to see Oprah end her network show. She is one of , if not the biggest, forces for anti-science and anti-evidence based medicine on the planet. She gives spotlight and credibility to all sorts of pseudoscience and medical BS that does great harm to individuals and to public health. Good riddance.
Well done, Mark. Your writing is always professional, educational and inspiring. The posting of today was fabulous…thank you for sharing, for caring. I am so proud of you, again…you are such an amazing man!
Thanks, Mark, for prompting memories of Joe and Amy and Bobby. Just last night I was going through some old material I produced for PWAC and there’s a wonderful picture of Amy in one of the brochures.
Thanks for posting this, Mark. It’ makes me think of my old friends in NYC when they were with us, and that’s a nice thing.
Mark — loved this piece. I keep up with your site regularly, but this one really struck a chord. Now, how to get governments (around the world) to really step up and make treatment more available. Such a great way to tie two very different milestones together. Brilliant work, my friend!