Monday, December 01, 2008
Did AIDS Change America?
By John-Manuel Andriote
More than 500,000 people have died from AIDS-related illnesses in the US in the last 27 years - but has AIDS really changed the country?
The actor Paul Michael Glaser, who presents a Radio 2 documentary on the subject on Tuesday, has no doubt it has had a tremendous impact at a personal level.
Best known as Starsky in the long-running television show "Starsky & Hutch," Glaser said: "AIDS had a huge impact on my life and on hundreds of thousands of my fellow Americans."
Glaser's own wife, Elizabeth contracted HIV, which causes AIDS, from a blood tranfusion in 1981 - the year AIDS was first reported in the US.
"The fact that no one could pinpoint exactly where the illness was stemming from led to confusion and a certain amount of panic.
Elizabeth and her daughter later died from AIDS-related causes.
Among the archival and new interviews used in the documentary, Elizabeth Glaser's speech to the 1992 Democratic National Convention raised issues still being raised in 2008.
"Do you know how much my AIDS care costs?," she asked.
"Over $40,000 a year. This is not the America I was raised to be proud of, where rich people get care and drugs that poor people can't. We need health care for all."
By the end of 2005, nearly one million Americans had been diagnosed with HIV-AIDS since it was first seen among a handful of young gay men in 1981, according to the most recent figures from the US Centers for Disease Control & Prevention (CDC).
But the figures do not begin to reveal the personal pain those who have been affected have experienced, or the prejudice they have had to endure.
Neither do they shine a light on the huge progress that has been made in managing - if not yet curing - HIV infection.
In the early 1980s, Glaser remembers society took time to adjust to the new menace: "The fact that no one could pinpoint exactly where the illness was stemming from led to confusion and a certain amount of panic."
High-profile actors, performers and athletic stars, such as Rock Hudson, Liberace and Ervin "Magic" Johnson, and the involvement of celebrities such as actress Elizabeth Taylor, helped stem that initial panic.
A teenage boy from Indiana called Ryan White, who contracted HIV from blood products used to treat his hemophilia, also played a big part in changing attitudes.
He showed Americans what it was like to live with the health challenges and social stigma of having what many considered a "gay disease."
After his death in 1990, the federal government passed the Ryan White CARE Act, today a $2 billion program funding HIV-AIDS care and support programs.
Gay community hard hit
Without doubt, AIDS has inflicted a terrible toll on the gay community.
America's best-known AIDS activist Larry Kramer recalls: "I had kept a list of how many I knew, and when it reached 500, I stopped keeping the list.
"All of my friends, everybody was dead."
Cleve Jones, a San Francisco gay activist and co-founder of the city's first Aids service organisation, was outraged that friends and families "were too ashamed" to acknowledge the cause of their loved one's death.
Jones formed the AIDS Memorial Quilt in 1987 as a way of memorializing the fallen.
Today the quilt includes more than 40,000 panels for those killed by AIDS - but that represents fewer than one in 12 of those who have died from the disease in the US alone.
The tide began to turn against HIV-AIDS in 1996, when combinations of drugs were reported to have tremendous effects.
By 1998, San Francisco's gay community newspaper Bay Area Reporter made headlines across the country with its own headline: "No obits."
With the promise of effective treatment, many lowered their guard against HIV, believing the expensive, toxic drugs would save them if necessary.
The upshot has been increasing new HIV infections, particularly among young African-American men.
Dr Marjorie Hill is director of New York's Gay Men's Health Crisis (GMHC), the world's first AIDS service and education organization founded by Larry Kramer and a small group of gay men.
She notes a CDC study which found 46% of a sample of young African-American gay and bisexual men were HIV-positive.
"That's outrageous," she said. "That's unconscionable."
"We're not going out of business - because unfortunately business is booming."
Profound yet incomplete changes
If the US has not become completely accepting of people affected by HIV-AIDS, there have certainly been profound changes in the lives of those affected personally, in the gay community and in society at large.
The greater visibility of gay people in mainstream culture, and a more tolerant attitude in society has helped.
I have spent half my life reporting on the impact of AIDS in America and AIDS has certainly brought a new level of maturity to many gay people.
We had to learn what integrity means and to be yourself and not be apologetic about who you are as a gay person even when surrounded by straight people.
People with HIV today are more involved in managing their own medical care.
And AIDS advocates have struggled to ensure that people with HIV and those with other illnesses participate as advisors, and not as mere "subjects," in medical research.
Carries a stigma
But despite greater awareness, HIV still carries tremendous stigma in America.
People within the gay community are judging each other based on HIV status
Dr Hill said nearly half the women in a GMHC support group have not told their families they are HIV-positive.
She said: "They said if I told my family, my niece and nephew would not be allowed to come eat at my house.
"This is 2008. That attitude is ridiculous."
Yet it persists among many gay people, too.
Bob Bowers is a straight man who has lived with HIV for more than 20 years.
He said: "People within the gay community are judging each other based on HIV status."
He notes that if an HIV-positive man asks a "neggie" for a date, "they are not even going to consider it."
Assumptions still made
For many, including some medical professionals, HIV-AIDS continues to be associated with people who "look" a particular way, live in certain parts of town, and have a non-heterosexual orientation.
Dr Hill said: "I'm an African-American woman living in New York.
"In New York black women are nine times more likely to die of HIV than white women.
"I have never had a medical provider ask me if I would like an HIV test."
The question must be asked again: Has AIDS really changed America?
The answer is yes.... but.
Yes it has had profound changes, but it depends on whom and which aspects of the country you are talking about.
John-Manuel Andriote is a former Washington Post journalist who has been writing and researching HIV/AIDS for more than 20 years. His former partner died of AIDS in the 1990s and he has been HIV positive himself since 2005.
How Aids Changed America is broadcast on 2 December at 2230 GMT on BBC Radio 2.