AIDS Turns 30

A conversation about progress, pain and the future of the disease

This year marks the 30th anniversary of AIDS as we know it. “The View from Here” is a special year-long series by the San Francisco AIDS Foundation created to put the anniversary into perspective – and to shed light on how far we’ve come in three decades.

Two fierce advocates for people living with HIV/AIDS – Jeanne White-Ginder, mother of the late Ryan White, and Judith Light, who played Jeanne in The Ryan White Story – discuss the progress and tragedies that have beset this disease. Please consider sharing your own stories.

We’ve learned a lot in 30 years. What do we have yet to learn?

Photos courtesy of SFAF

White-Ginder: How to stop the spread of AIDS, because of our ignorance of being able to talk about it, and because of the religious and moral issues that have always surrounded this disease. I think the general public has never wanted to give proper education to our young people. The drug treatments are great, but we need to stop the numbers of new infections from climbing here in the United States. We’re the most educated people on earth and that just really puzzles me.

Light: We still need to learn that AIDS is not only a scourge and our oppressor, it is also our teacher. The gay community was met by this pandemic and rose to an incredibly impressive level, becoming not only a “real community,” but one that could and should be honored and emulated by the rest of the world. We need to learn that what impacts people is inspiration and example, not preaching or haranguing.

What was your deciding moment, when HIV/AIDS became an important issue in your life?

White-Ginder: When I saw how my son was being treated and realized that everybody else was being treated the same way. It was kind of strange to me because I didn’t think people would treat Ryan that way. I mean, Ryan wasn’t gay or an IV drug user. Dr. Kleiman told me that when Ryan was diagnosed with AIDS, he would probably only live three to six months. As a mom – every cough, every fever – I would worry it was going to be the last. So my first thought was, I want Ryan to live; how can I get this kid to live?

Light: HIV/AIDS became the context for my activism when I was shooting The Ryan White Story, an ABC movie, and I was playing his mother, Jeanne White-Ginder. Ryan and Jeanne were very inspiring to me. In the process of my becoming more a part of fighting AIDS, the inherent underlying homophobic response of the country as a whole, and the government in particular, was so patently clear that it simply propelled me into becoming as much an activist for the GLBT community as for the HIV/AIDS community.

White-Ginder: As I started meeting people with AIDS, I started meeting their moms, dads, families, and partners, and I realized we were all just alike, we were all fighting to survive. We all wanted our kids to live and the people wanted to live. At that time there was so much focus on the person with AIDS, and there was no focus on the families and the other people suffering with them. At the same time, there were a lot of parents who wouldn’t have anything to do with their kids. It was heart-wrenching to me how people could leave their children and not support their children, particularly at a time when they were sick.

Light: It is the gay and lesbian people I have known most of my life who are the real touchstones for me in defining how I choose to live my life and how I want to “be in the world.” They are authentic and courageous, and I am most inspired when they do what we all did in the early years of the pandemic, holding a mirror up to the country and showing them – with confrontation but without rage or attack – that the nation was simply not living up to either its potential or its pretense.

White-Ginder: I never thought this would be my platform, but I had all this support. I remember Senator Hatch telling me (before testifying on Capitol Hill), “Just be a mom, and tell these senators what it was like to watch your son live and die from AIDS.” I was just another avenue to help people listen and learn about this disease. I just didn’t want to let anybody down.

With ever-increasing public health issues to contend with, why should anyone still prioritize HIV/AIDS?

Light: The aphorism of “a rising tide floats all boats” applies here, I think. All of us need to be aware and committed to all issues of health and human rights. It is not a question of “either/or” but one of “both/and.” While I am realistic enough to recognize that there are finite resources in the world, I also firmly believe that ultimately it is an issue of priorities. Why do we discuss which public health issues to contend with rather than looking at whether we can spend less on greed, graft, and war and put more into human needs?

White-Ginder: It’s still a priority because the disease changes all the time, and even the people who have it.  As far as the gay community, I think so many of the new gay youth don’t know the devastation that their peers had in fighting this disease. I’ve always been about young people, and I can remember Ryan saying, “Oh, mom, we’re the most likely to experiment with sex, drugs, and sexuality, so this is our disease. Us teenagers should know this is important.” All the time, I recall little remarks that Ryan made that I thought were so intellectual for his age and so inspiring.

What keeps you up at night?

White-Ginder: Are we going to wake up in five years and see that this disease has gotten worse? I just don’t think that people think it’s serious and realize how expensive it is to treat HIV and the side effects from the medications. I just don’t think people really know or understand, and I don’t think people care about HIV/AIDS until it effects them directly.

Light: I work to do what I can so I can take care of myself in most critical ways and that includes not staying up at night. I am a big believer that we have to “do” rather than “worry,” even though I admit this is a constant challenge for me, as well as most people I know.

Three decades into the epidemic, what gives you hope?

White-Ginder: The drugs and the hope that we’ll find a cure. I think that is going to be the only thing that really ends this disease, if we get a drug that shows response in preventing the disease or can actually kill HIV.  We can’t keep footing the bill. This disease is very costly to treat. I’m also hopeful because have a president who is familiar with the disease and who cares about the disease.

Light: Human beings give me hope.  When push comes to shove, I really do agree with Anne Frank that people are basically good. Nowhere in my life is that more demonstrable than in the gay and the HIV/AIDS communities.

White-Ginder: I lost a lot of the people who helped me get to where I needed to be to work in the AIDS epidemic, and they were so supportive of me. And I just hope that everybody does not forget the people that got us to where we are today, because they are part of the treatment and drugs that we have today. We can’t see their faces, but they were real people, too.

For more information about this educational series, please contact the San Francisco AIDS Foundation. Or find out what you can do for yourself and others in Philadelphia by reaching out to local organizations ActionAIDS, AIDS Fund and Mazzoni Center.