When Bruce Whitmore visited the AIDS Memorial Quilt on the National Mall in Washington, DC, he says, it was a life-changing experience.
"You couldn't go to that and not be moved," he says. "Seeing all these people who died, you couldn't stop crying." That was in October 1996, and it was the last time that the AIDS Quilt was displayed in its entirety; it's grown too large to transport and display.
Whitmore, who has been HIV positive for more than 30 years, helped organize the "HIV/AIDS Candlelight Vigil," which will be held on Tuesday, July 17. The event is sponsored by the Rochester Victory Alliance, the HIV vaccine research arm of the University of Rochester Medical Center. Participants will gather at the AIDS Memorial in Highland Park at 7:30 p.m., and there'll be a march to the Medical Center, where families and friends of those who died of AIDS will share loved ones' stories.
While AIDS vigils were commonplace in cities around the country in the 1990's, they're less common today, Whitmore says. And that seems to reflect a cultural shift even within the LGBTQ community, where other issues – marriage equality and transgender rights, for instance – are getting more attention.
That's all good, he says, "but I was afraid that people were forgetting the many people who have lost their lives to this disease." Whitmore found that many people in Rochester's LGBTQ community didn't even know there was an AIDS Memorial here.
AIDS isn't the death sentence it was during the 1980's and early 1990's. But the rates of infection and deaths from AIDS and HIV disease in the US are still significant. The CDC reports that in 2015, 1.1 million people were living with HIV. An estimated 20 percent didn't know it.
Locally, there were approximately 1,049 people living with HIV in Monroe County in 2016 and 1,341 were living with the later stages of HIV or AIDS, according to a report from the New York State Department of Health. In Monroe County, there were 49 new cases of HIV and 33 new cases of AIDS in 2016.
Many people today have never seen someone who is dying from AIDS, and they don't know the devastating impact it had on the LGBTQ community during those early years, Whitmore says. And if you were HIV, positive people were afraid to be near you, he says.
"You had to be quiet about it," Whitmore says. "They wouldn't touch you. They wouldn't drink out of the same glass. You were really, really isolated."
It wasn't just the illness you had to cope with if you were positive; you had to worry about losing your job, your home, and even close friends, he says.
"We remember Stonewall as part of our history," Whitmore says, "but we look at AIDS differently. This was part of who we are, too."
People may think the problem has been solved and that HIV and AIDS is no longer a threat, but that's not true, Whitmore says.
"I remember when I was diagnosed, it was like the sword of Damocles over me," he says. "I kept asking when is AIDS going to take me?"
That anxiety and stress is still there for most people who are newly diagnosed. But attitudes about safe sex and HIV infection seemed to change after the drug cocktail came out, he says.
"I think many younger people think that there will be a cure in their lifetime or they can just take the medications," he says.
It's true that there have been many advances in research and treatment of HIV, says Dr. Michael Keefer, a URMC professor and researcher in infectious disease. But the treatments can have serious side effects, they're expensive, and they can cause cardiovascular problems, says Keefer, who will be speaking at the vigil.
Keefer, who went to his first World AIDS Conference in 1992, will attend this year's conference, which starts later this month in Amsterdam.
"There was no good HIV medical treatment back then," Keefer says. "We were just beginning to understand that AZT could prevent transmission from mother to baby."
The UR's research for the last 30 years has focused on new medicines and finding a vaccine, Keefer says. But despite the advances, relatively little progress has been made at eliminating bigotry and stigma, which still create barriers in some communities to getting tested and, if needed, getting into treatment, Keefer says. Events like the upcoming vigil help to chip away at it, he says.
"Stigma still exists the same as it's always been for men who have sex with men, especially men of color," he says.
(Information about the event or about volunteering for a vaccine trial is available at 585-756-2329).