This June marks the 30th anniversary of the first diagnosis of AIDS in the USA. John-Manuel Andriote is a gay activist, journalist and author, now living in Connecticut, whose ground-breaking 1999 book Victory Deferred: How AIDS Changed Gay Life in America is a chronicle of stories from those touched and affected by HIV AIDS.
dot429: Why did you write Victory Deferred originally?
John-Manuel Andriote: After reporting on the HIV epidemic since the late 80’s while in journalism school at North Western University, I had developed contacts throughout the country: people in AIDS organizations, people in government agencies, people in the gay community. I was in a good position to write about how AIDS changed gay life in America.
dot429: How much research did you undertake on the original book and can you remember how long it took you to write it?
JMA: It was a very long process. I did preliminary research in the spring of 1994 and in 1995 I began doing the interviews. I travelled around the United States, ultimately interviewing about 200 people, as well as drawing on interviews I had done in my previous reporting. I was also reading books and journals, so I really did a tremendous amount of research on the literature of AIDS, as well as first hand interviews.
dot429: How willing were people to talk to you about AIDS?
JMA: People were very willing to talk. I interviewed folks from community level activists to people who had been personally affected, to Doctor Anthony Fauci, who was the Federal Government’s highest ranking AIDS scientist. People were very willing to talk to me, but they were also interested in getting their stories out there.
dot429: You yourself were diagnosed with AIDS. To a certain degree was this book a personal crusade after you were diagnosed?
JMA: At the time the original book was published in 1999, I was HIV negative. At that time I had lost friends, starting in 1985, when we were in our mid-twenties. There was a sense that this was my story in that I had been affected and I belonged to the gay community, but it was always their story. In 2005 I had the shock of my life; after a routine checkup I tested positive. I decided in revising Victory Deferred, for which I did about six dozen more interviews, that it would be interesting for me to revisit the history through the eyes of someone who was now as personally involved in the story as it’s possible to be.
dot429: You spoke to many eminent people in the medical world and people living with HIV during the last year. What concerns do they have about HIV AIDS 30 years on?
JMA: One of the biggest concerns is the amount of people who become newly infected. 1 in 5 people who are HIV+ don’t know it, which was my own experience. I had no idea because I had no symptoms. Another concern is that until or unless there’s a cure for HIV, everyone who is infected will at some point need medication. My own medications cost roughly $27,000 a year. Multiply that by the tens of thousands and millions of people worldwide, who are infected with HIV, who don’t have access to anti-retroviral therapy and we have a situation that is just unsustainable. So there’s a new emphasis and new interest in finding a cure for HIV.
dot429: Do you feel the last 30 years of HIV AIDS has helped or hindered gay society?
JMA: The AIDS epidemic built the political gay movement in the USA. AIDS brought many men out of the closet and forced them to become involved in the gay political movement, to contribute to organizations that gay people created to serve those with HIV, and to advocate on behalf of those with HIV. Larry Kramer was not a politically active or involved gay man; he stayed away from gay activism as far as possible. But once AIDS hit home for him and started killing his friends, it became a personal issue for him, he became very vocally and financially involved. AIDS really enhanced the political movement in ways that wouldn’t have happened without it. On the other hand, AIDS killed many prominent activists in the community in the 80’s and 90’s, so a lot has been lost, but a tremendous amount has been gained by bringing gay people forward in this movement.
dot429: 30 years on, how do you feel people’s attitudes have changed towards AIDS?
JMA: At this point we have effective medical treatment for HIV, so we don’t see people seriously ill with AIDS related conditions such as Kaposi’s Sarcoma, the skin cancer that really branded people. It was like a stigmata on many gay men with AIDS in the 80’s; there’s no denying one had HIV when it was apparent on his face. Now with medical treatment, people like myself can go for extended periods of time, perhaps even a lifetime, without developing advanced HIV disease known as AIDS. So there’s less fear and dread of HIV because we don’t see the serious illness and death before us. But it’s still important to remember that people are dying every day from HIV related causes.
dot429: What more needs to be done to educate people and whose responsibility is it?
JMA: Educating people about HIV is really a responsibility of everyone, from parents to schools to the communities that are most heavily affected by HIV, particularly the gay and the African American communities. It’s our responsibility to educate young people about how to protect themselves and their partners, so they will understand that it’s possible to enjoy a healthy sexual and romantic life without putting themselves at risk. The responsibility should be shared among all those who help shape the attitudes and behaviors of young people in particular.