By Susan Abram, Staff Writer
June 4, 2011
Paul Bedard with his painting supplies in his West Hollywood apartment.
Bedard, 59, of West Hollywood is living with AIDS 30 years after the disease
was first identified by the CDC.
(Michael Owen Baker/staff photographer)
Paul Bedard survived the worst of the epidemic - when almost every man he knew fell victim to a mysterious illness and death haunted his community.
But nearly 30 years after he was diagnosed with HIV, Bedard hesitates to say he has outlived the disease that claimed so many gay men of his generation.
The 42 pills he swallows by the handful each day keep him alive, but the side effects - both physical and mental - have nearly killed him, he said.
"I'm going to be 60 years old this year and I've lived half my life with AIDS," said Bedard, a West Hollywood painter who was once commissioned by Michael Jackson to paint the pop star's portrait.
"Sometimes I think, 'This is no way to live,"' he said. "It's been a challenge."
Despite years of illness, Bedard's survival symbolizes how far researchers have come in the battle against HIV and AIDS.
Today marks 30 years since the first AIDS cases were reported in the United States, contained in an article by the Centers for Disease Control and Prevention about five Los Angeles men who inexplicably were suffering from a rare form of pneumonia.
That cluster of five cases provided physicians and researchers with the first clue that they were dealing with a previously unknown disease, said Dr. Michael Gottlieb, a UCLA immunologist who, with the late Dr. Joel Weisman of Sherman Oaks, first identified AIDS.
After the CDC report, physicians nationwide contacted Gottlieb.
They reported seeing similar symptoms among their patients, who were also suffering from unexplained weight loss, swollen lymph nodes, fever and rash. Some also displayed the crimson marks that resulted from the soft-tissue cancer known as Kaposi's sarcoma.
The disease didn't yet have a name, but it was spreading. And by the end of 1982, it had claimed 500 lives.
"It was a sad time," Gottlieb said in a phone interview. "I remember when Sherman Oaks Hospital became a hospice. I remember handsome men whose faces had been disfigured by Kaposi's sarcoma."
In 1982, the CDC coined the term AIDS, for acquired immune deficiency syndrome. A year later, researchers isolated the infectious agent - dubbed the human immunodeficiency virus - causing the disease.
"I had no idea that five cases would later turn into 25 million deaths worldwide," Gottlieb said. "We knew we had something huge, but we were uneasy about it being sexually transmitted."
But physicians began to see a pattern: HIV and AIDS were occurring primarily among men who had sex with men.
Early years of disease
Because of the disease's links to gay sex and intravenous drug use, there was little mainstream support for those suffering from HIV and AIDS. It wasn't until the surprising death of handsome leading man Rock Hudson in 1985 that the disease claimed the public's attention.
Other stories followed: Ryan White, a hemophiliac who was expelled from his Indiana middle school after he contracted AIDS from a contaminated blood transfusion; and Elizabeth Glaser, the wife of actor Paul Michael Glaser, who became an activist after she, too, contracted HIV through a blood transfusion.
Los Angeles Lakers legend Magic Johnson's 1991 admission that he was HIV-positive opened the discussion that AIDS could be transmitted through heterosexual contact. Pedro Zamora of MTV's "Real World 3," brought the disease to people's homes before dying in 1994 at age 22.
With greater public awareness came heightened support and increased funding, spurring advances in research.
Medications improved, advancing from the toxic, anti-cancer drug known as AZT to anti-retroviral medications that allowed those with AIDS and HIV to live for years with the disease.
But Gottlieb and many others say much work is left to do. A vaccine has yet to be invented. A knot of poverty, racism and homophobia hinders prevention, intervention and access to health care within the black and Latino communities, where the number of HIV infections continue to grow.
And among youths, there is a dangerous belief that a cure for HIV exists.
"I understand after 30 years there's going to be passion fatigue in the public for HIV/AIDS, but it's foolish for the public to put it on the back burner," Gottlieb said. "We don't hear about HIV/AIDS anymore except for on anniversaries."
Nearly 30 million people have died of AIDS since the first five cases were recognized.
About 33 million people worldwide have HIV, including more than 1 million in the U.S.
An estimated 63,000 people in Los Angeles County are infected with HIV. Of those, 38 percent are white, 38 percent are Latino and 22 percent are black. Twelve percent are women.
And, despite efforts to educate the public, about 3,100 people in Los Angeles County are infected with HIV each year.
Today's anniversary not only is a look back, but a reminder of what's left ahead, said Craig Thompson, the executive director for AIDS Project Los Angeles, a nonprofit organization that was founded in 1983 to educate the public about AIDS and to advocate on behalf of those affected.
"Anytime we hit these milestone dates, it gives us an opportunity to step back and look at the progress made and the disappointments over the years," Thompson said.
"There's also always a sense of loss on a day like this. A generation was wiped out," he said. "One of the biggest disappointments is obviously we're still not close to a commercially available vaccine."
Thompson also said the continued infection rate proves prevention and intervention remain necessary. The recession has cut into both private and public funding, threatening those efforts.
The cost of caring for someone with HIV is about $700,000 over that person's lifetime, Thompson said.
With more prevention and ultimately intervention, that's $700,000 less that the government needs to spend.
Thompson said if funding for prevention efforts falls further, then years of work to encourage youth to practice safe se will unravel.
"A significant issue of today is the belief that HIV is cured and is gone," Thompson said. "We sort of went from a very scary time in the beginning, to acceptance and lot of community support, to now a feeling of we've beat the disease and complacency."
Several organizations that work in the field of AIDS and HIV recognize those remaining challenges.
To mark the 30-year anniversary of the first documentation of the disease, the AIDS Healthcare Foundation will hold a candlelight vigil tonight in West Hollywood.
The foundation calls the event an opportunity to renew efforts to increase access to HIV testing, prevention and treatment locally, nationally and globally.
"Those of us in the field have fought a Herculean battle for 30 years," Cynthia Davis, vice chairwoman of AIDS Healthcare Foundation's board, said in a statement.
"We have had many victories and defeats," she said. "We now know what works and what doesn't.
"We know that only a fraction of people living with HIV in the world are currently receiving treatment," Davis said. "We know that universal access to condoms and science-based sex education will reduce new infections."
Bedard, the artist who has been living with the disease since his early 30s, said the perception among the young that HIV is easily treated angers him.
The medication "cocktails" that keep him alive have serious side effects. He's suffered two heart attacks and has undergone seven angioplasties. He developed diabetes and has experienced kidney failure. He also suffers from depression.
"I talk to young people who go to the sex clubs and they don't protect themselves," said Bedard, an APLA client.
"I tell them, 'Don't be foolish. It's still a death sentence.' But when you're dealing with the young, they don't think about death."
Bedard didn't think of death either when he was a young artist living in Hollywood. At the time, the gay community was still celebrating the Stonewall Rebellion of 1969, a series of riots in Greenwich Village, N.Y., that marked the beginning of the lesbian, gay, bisexual and transgender movement.
The freedom after the riots was intoxicating and was celebrated with promiscuous sex, Bedard said. In Los Angeles, gay men met in bathhouses, bars and sex clubs, or at Griffith Park.
By the time news spread that gay men were dying of a mysterious illness, Bedard figured he, too, was infected. In 1985, he learned he was HIV-positive.
He and his partner agreed not to disclose their HIV status. They moved from West Hollywood to the suburbs - "Everyone was dying, so we were so numb," he said.
But they eventually returned to West Hollywood, where they became activists and fundraisers for AIDS causes.
Before the disease
Today, inside his one-bedroom, West Hollywood apartment, there are reminders of who he was before the disease: a photograph of a young, brown-haired, blue-eyed Bedard sporting a thick mustache with his arm around his partner, Simon.
When Simon died of AIDS in 2005, Bedard said his own illness worsened.
"Friends said it was because I was distraught with heartache," Bedard said. "I was broken inside. They said I grieved too much."
He continues to paint, however, even though the tremors in his hand slows his efforts. His latest work symbolizes the cycle of life as it shows leaves and nature in several stages through the year.
The truth about living with AIDS, Bedard said, of having survived so long and witnessing friends die, is that death is never far from his mind.
"You just keep working and going on but you always wonder, 'When will it be over?'" he said.
© 2011 Los Angeles Newspaper group