Joe Lemieux stops in front of a memorial bulletin board at the Boston Living Center and points to the photo of a man who died in October at 51. “He was a friend of mine,” says Lemieux.
There are other photos, too. This one died at 62, that one at 53, another at 48.
They died because of HIV/AIDS. “This is still happening,” says Lemieux. “It’s not over.”
Thirty years after AIDS began plowing a deadly path through the gay community, Lemieux, a longtime HIV survivor, is spreading his own message to the younger generation of gay men who, he believes, need a reality check.
Tuesday night, Lemieux, 55, will speak at the BLC’s 25th anniversary and Celebration of Life dinner at the Hynes Veterans Memorial Convention Center. He’ll talk about the bad old days, when AIDS dominated the headlines with stories that he and others liken to a more widespread Ebola epidemic.
He’ll also deliver this warning: Stop engaging in risky behavior. Far too many have become complacent owing to medical advances that they mistakenly believe have rendered HIV/AIDS a nonissue.
“He’s articulate and brave, and he and others on our community advisory board look out for the newer members of our community,” says Larry Kessler, program director at the Boston Living Center, a nonprofit that is New England’s largest community center for those with HIV/AIDS.
When Lemieux was diagnosed with HIV in 1988 at 29, most people didn’t live with it. They died from it. At its peak in the United States in 1995, about 50,000 people died — the number one cause of death in the age group 25 to 44. In 2010, it was the seventh leading cause of death for Americans in that age group, according to the Centers for Disease Control and Prevention.
“It was a scary time,” Lemieux says. “You didn’t talk about it. It was kind of like ‘Don’t ask, don’t tell.’ ”
He still remembers the clinic in Providence where he was diagnosed. “Even health workers didn’t want to touch the doorknob I had touched,” he says. “The doctor came in and told me the news. I got in my car and thought, Should I drive into a wall or over a cliff? That’s how terrible it was back then.”
Lemieux, who grew up in New Bedford, waited five years before he told his family, though his sister, an IV drug user and prostitute, was also HIV-positive. He, too, developed drug and alcohol problems after his diagnosis, but has been sober for 15 years.
You wouldn’t know Lemieux has been living with a dread diagnosis all these years. His weight and color are good, he exercises regularly, always has a joke at the ready, and in general, smiles at life. “I see myself living to 90 or 100 because I take good care of myself,” says Lemieux, who lives in subsidized housing in the Fenway for those with HIV.
There was no treatment when Lemieux was diagnosed. There still is no cure, but drug cocktails formulated in the mid-1990s meant that for many, HIV became a chronic condition instead of a death sentence.
Today, he hears young men talking about HIV as if it is the common cold. “But if you come here” to the BLC, he says, “you can see it’s not over.”
In 1989, when Lemieux first sought out the fledgling center, it was on the eighth floor of a YWCA and simply offered a warm place to go and a volunteer who gave haircuts. It now has its own Back Bay building, and the clientele has changed too: Instead of being overwhelmingly gay men, 28 percent are homeless, 25 percent are women. More than 15,000 people in Massachusetts are living with HIV, according to the center.
Kessler, 72, has worked in the trenches from the start. In 1983, he founded the AIDS Action Committee, the city’s first nonprofit devoted to the cause, providing education and prevention programs, political lobbying, and support services.
“In the ’80s and early ’90s, people spent a lot of time going to hospitals, funerals, and wakes,” says Kessler, who has never been infected with HIV.
“Safe sex” became the catchphrase, the way to keep from getting infected. It is a lesson that the older generation of gay men believe is lost on the younger.
“They have no clue as to what this disease is capable of,” says Kevin Koerner, 55, who works at the BLC and is HIV-positive. “They think meds can keep it in check, and they can act as crazy as they want. But they need to smarten up and realize that there’s a whole panoply of sexually transmitted diseases including HIV that can possibly kill you.”
Even though he’s healthy, Lemieux plans to tell his audience Tuesday that it isn’t easy staying that way. “There are only a handful of survivors like me,” he says.
From 1997 to 2000, Lemieux’s drug regimen, vitamins, and antianxiety medications added up to 30 pills a day. Today, he’s on one antiretroviral pill. The meds that have helped keep him alive can have serious side effects: He contracted lipodystrophy that created a hump on the back of his neck, which pushed against his airways and had to be surgically removed. The drugs can also cause fatigue, and stomach and heart problems, he says.
Lemieux eats lunch at BLC most weekdays. Though many of today’s clients are IV drug users or their partners, there are still tables of young gay men he sometimes sits with. He’s heard talk of “bug chasers,” or those who actually are trying to become infected with HIV.
“There are people who are using drugs like Ecstasy and having promiscuous sex, going to big raves in places like Montreal, South Beach [Miami], New York,” he says. “They’re either worried about getting it, and want to go ahead and get it over with, or they want to get on [disability] benefits. But there should not be any new infections this long into the virus.”
According to the CDC, there are still 50,000 new cases of HIV annually in the United States. “The number of new infections should be dropping and it’s not,” says Kessler. “The group where it’s still rising are those between 18 and 25. This is a whole new generation of people who weren’t around in the ’80s and ’90s and that’s one of our big concerns.”
In 2010, about 15,500 people with an AIDS diagnosis died, but the CDC says that some of those deaths may be due to causes other than the infection.
Mike, 30, who only wants his first name used, is a BLC member. He was diagnosed in 2008. From the older generation, he knows the history of the disease, “when it was considered a punishment for being gay.”
Like Lemieux, Mike takes one antiretroviral pill a day and says he feels good. He works as a personal care attendant for someone with HIV and other ailments. “I know that as long as I eat properly and take my medication every day, I’m just as likely to live to be as old as any other person who is not infected,” he says.
Mike, who hasn’t lost any friends to AIDS, agrees that risky behavior still occurs. And he knows that the younger generation sees the virus differently. “To the older guys, everything’s a big deal. We understand we have to look up to these people who are still here. We respect them and know we may go through similar stuff and if we’re still here at their age, it’s a blessing.”