HIV/AIDS 30 years later: Increase in cases, drop in funding raises concerns

By Lindsay Tice, Sun Journal
Posted July 05, 2011, at 11:53 a.m.

It was 1986 and there weren’t yet good guidelines for breaking the news. Brandon Garette’s doctor told him he was HIV positive over the phone.

Garette was 21 years old.

“I went through six months of nightmares of my funeral, who was there and who wasn’t there. Seeing the casket lowered into the ground all the time,” said Garette, who believes he got the disease from his first boyfriend. “It was just horrifying.”

Back then, Garette was one of 82 people known to be living with HIV/AIDS in Maine. Today, 30 years after the U.S. Centers for Disease Control and Prevention first reported on what would become known as HIV, he’s one of more than 1,500.

Then, there were no good treatments. Today, several drugs effectively combat the disease.

Then, people with HIV or AIDS were ostracized, denied medical attention, housing, the right to go to school. Today, although there’s still a stigma attached to HIV and AIDS, the terror is largely gone.

Garette, who lives in Old Orchard Beach, has watched so many friends die of the disease that he’s lost count. Like the 1,500 others in Maine, 50,000 people throughout the country and 33 million people around the world, he has his health problems, but he’s living with the illness.

“I say, ‘I woke up this morning, my eyes opened, I’m breathing. It’s a good day,’” said Garette, who just turned 46.

But while HIV/AIDS is no longer the death sentence it once was, those who deal with it say there are still problems, including an increase of nearly 100 cases a year in Maine and a drop in funding and public attention as HIV and AIDS become something less scary and more livable.

In the world of HIV, life is better. But some worry lagging education and slacking prevention could soon make those dark days return.

“I think the virus needs to be put on the front burner again,” Garette said.

First cases

On June 5, 1981, in its Morbidity and Mortality Weekly Report, the federal CDC ran a short notice about the unusual illness of five men in three hospitals in Los Angeles. All five were gay. All were young and had been apparently healthy. All had a type of lung infection normally seen only in people with severely suppressed immune systems. Two had died.

It was the first national hint that something was wrong.

The Associated Press and Los Angeles Times immediately wrote about the CDC’s report, according to the U.S. Department of Health and Human Services. A day later, the San Francisco Chronicle got in on the story. Soon the CDC was flooded with reports from doctors who’d seen that lung infection and other opportunistic infections in gay patients, some from as far back as the 1970s. Within six months the CDC had learned of 270 cases, including 121 deaths.

Portland doctor Ann Lemire was doing her residency at a hospital in New York in the early 1980s. No one knew what the disease was exactly, how it was contracted or how to treat it. Early on, the condition was dubbed Gay-Related Immune Deficiency, or GRID.

“I can remember admitting young men and we knew they were dying. They totally had dementia. They were totally wasted. What we spent our time doing was hanging morphine drips,” said Lemire, who now specializes in HIV/AIDS patients. “My first four years with the disease, all we offered them really was a management of their deaths.”

By 1982, GRID had a new name: Acquired Immune Deficiency Syndrome, or AIDS. Within a few years, AIDS would spread to thousands in the U.S. Although originally reported in gay men, it would soon also be seen in others, including hemophiliacs who had received tainted blood.

In 1984, the first three AIDS cases were diagnosed in Maine.

In 1987, Garette learned his boyfriend of six months had been “hustling” in a park in Portland.

Crushed by the bad relationship, Garette took an overdose of sleeping pills in an attempt to kill himself. The aftermath is hazy for him, but Garette was told he called an ambulance at the last minute, that emergency workers found him passed out on his living room floor, that his heart stopped three times at the hospital. Once he was stable, he was sent to the Augusta Mental Health Institute. Although Garette doesn’t remember making the request, he was told he asked for an AIDS test when he got there.

A week after he was discharged from AMHI, Garette’s doctor gave him the news over the phone: He had HIV, a precursor to AIDS. The doctor told him he had six to 12 months to live.

“After just coming out of an attempted suicide and getting that news, you can only imagine what I was going through,” Garette said.

He spent the next six months battling depression and dealing with nightmares of his impending death. Across the country, many AIDS patients were dying within months of diagnosis. Some lasted a few years.

Panic ruled as the nation struggled with the epidemic that was growing so fast it would become the leading cause of death among Americans 25 to 44. In the mid-1980s, many people didn’t understand how the disease spread and they feared contracting it from even common contact. In Indiana, Ryan White, a hemophiliac teenager who contracted AIDS though tainted blood products, was denied entry to his middle school. In Florida, a school board refused to allow three HIV-positive hemophiliac brothers, Ricky, Robert and Randy Ray, to attend school. When a judge forced the school district to relent, other parents pulled their children from class and someone burned down the family’s house.

“It was a very different atmosphere in which people were very, very afraid. The fear within our communities around HIV and those issues was just rampant,” said Andrew Bossie, executive director of the Maine AIDS Alliance in Portland.

In Maine, a dozen independent nonprofits popped up to help AIDS patients with testing, medical care, hospice, support and defending their rights. They worked to educate school kids, their parents and the general public about the disease and how to prevent it. The Maine AIDS Alliance was formed in 1989 as a statewide advocacy group and to help those new organizations operate and coordinate.

But despite that growing advocacy and the “coming out” of some high-profile AIDS patients — including actor Rock Hudson — it wasn’t uncommon for people to hide their diagnoses. They feared being abandoned by friends and family. They believed they would be shunned by neighbors, kicked out of school, fired from work.

Garette quietly dealt with his HIV for months. Close friends and family members knew he’d been diagnosed, but some had a hard time believing it.

“Whenever I was around, they would harp on it. ‘You’re just doing it for attention. You don’t really have this’ and ‘You look so healthy and people who have it look so sick,’” he said. “AIDS is like cancer; it eats from the inside out. They just couldn’t understand that.”

After six months of nightmares, Garette had an epiphany: He didn’t have to silently fade away.

“Call it divine intervention, call it whatever you want … I was always one of those kids in school that was always picked on and was always the outcast, so I never cared about what people said about me when I got older. I figured maybe this [diagnosis] wasn’t a bad thing at all, maybe there’s a reason for this. And the only reason I could come up with was the fact that I’m not afraid of what people say about me,” he said. “So that’s when I decided maybe I’ll get into public speaking.”

Garette began speaking about HIV/AIDS at schools and adult education programs. He went public, doing radio, TV and newspaper interviews about living with HIV.

But even as self-assured as Garette was, he worried about the impact of publicizing his diagnosis. As insurance, he spoke only to media outlets in northern Maine, the other end of the state from family members.

“I didn’t have to worry about people seeing it and going after my family or anything. That was a real fear for me,” he said. “I didn’t want retaliation against my family.”

Growing treatment

In 1987, federal government approved AZT to treat AIDS. It would remain the preferred AIDS drug treatment for a decade, and some patients credited the powerful medication with extending their lives. In 1994, prenatal use of AZT was also found to drastically reduce the risk that an HIV-positive mother would pass the disease onto her child. That finding would nearly eliminate the number of babies born HIV-positive in the U.S.

But AZT had debilitating side effects that sickened some patients so badly they refused to take it. And the drug didn’t help stave off the disease forever. Garette watched friend after friend die. At one point, he bought his own cemetery plot and made his own final arrangements so his family wouldn’t have to do it when his time came.

By the mid-1990s, a cocktail of drugs became the favored treatment for AIDS, but that wasn’t perfect, either. The cocktail contained AZT and other drugs that had to be taken on a gruelingly precise schedule — some with food, some on an empty stomach, some within certain hours — and delaying or missing a dose could cause the virus to mutate and attack again full force. The cocktail also caused debilitating side effects, including lumps of fat some call a “buffalo hump,” depression, diarrhea, nausea and weakness.

“I couldn’t take any of them,” Garette said. “I was so sick in bed after three days that I could barely move. It was just horrible.”

In 1998, a Bangor mother made international headlines when she refused to give the cocktail containing AZT to her 4-year-old HIV-positive son, Nikolas Emerson. Valerie Wilks, then Valerie Emerson, said AZT led to the agonizing death of her 3-year-old AIDS-positive daughter and sickened her son so badly she feared it would kill him, too. The state fought Wilks’ decision, taking her to court in an effort to seize custody of Nikolas. The Maine Supreme Judicial Court ruled in Wilks’ favor.

Nikolas died at age 11. His family would not publicly say whether his death was related to AIDS.

By the late 1990s, the drug cocktail was a staple of AIDS treatment. Like AZT, it was credited with extending lives. Patients were living years, and in some cases, decades. And thanks to education, public service campaigns and the diagnoses of more celebrities — including basketball great Magic Johnson — more people knew about HIV/AIDS and how it was contracted (through blood, breast milk and sexual contact). The stigma was less. But it was still there. And among some, there still seemed to be a distinct lack of knowledge.

Judy Emch, then-director of health and safety for the United Valley Chapter of the American Red Cross, conducted HIV/AIDS education and prevention workshops throughout the Lewiston-Auburn area.

“I remember local political leaders in Lewiston-Auburn saying, ‘What? We don’t have HIV here!’ ‘Yes, unfortunately you do,’” Emch said. “There was just a ton of misinformation.”

Like Emch, Garette battled that misinformation by teaching about HIV/AIDS and by public speaking. In the early 2000s he officially abandoned his birth name — Eric James Clifford — in favor of the pseudonym Brandon Garette. Although he’d been careful about where he spoke, his family still felt the sting of his public acknowledgement of his disease.

“There are still a lot of people out there that discriminate against this disease, still think you can get it from being in the same room, drinking from the same glass, eating off the same plate,” he said. “I mean, there are still some people out there who don’t know anything about this disease.”

Hope and fear

Today, more treatment options exist for AIDS, including medication taken just once or twice a day. Side effects can still be a problem, but doctors say the new medications are more easily managed.

“I tell my new patients, ‘You will not die of HIV.’ We can make that promise clearly and without misleading anyone,” said Lemire, medical director of the India Street Clinic in Portland and Positive Health Care, a Portland primary care practice for patients with HIV/AIDS.

No longer a death sentence, AIDS is most often treated like a chronic disease. Some consider it something akin to diabetes — life-threatening and complex, but controllable.

“Ten years ago, we wanted to keep them alive. Now we know we’re going to keep them alive from HIV,” Lemire said.

But lowering the status of AIDS from a fatal disease to a chronic one comes with issues of its own. In Maine, those issues are reduced funding, education and awareness of the virus, especially among people who don’t realize they’re at risk for it.

The local chapter of the Red Cross stopped doing AIDS education years ago because it couldn’t find the funding.

Most independent nonprofit AIDS groups in Maine have merged or closed due to a lack of private donations and federal grants. Among those was PreventionWorks in Lewiston, which merged with a coastal nonprofit and then folded a few years ago when it couldn’t support itself, taking the area’s only needle exchange program with it.

The Maine AIDS Alliance, which was founded to advocate for those battling the disease and to support nonprofits doing AIDS work, had planned earlier this year to close its doors and start a successor organization with a slightly different mission. Instead, because of a loss of grant funding, the alliance will completely shut down and will not restart.

“We were responding to what we see as a huge sea change on a national level,” said Bossie, whose last day as executive director was Friday. “We saw a couple of things coming down the pike and we said, ‘OK, we need to move to a new model.’ Then everything came a little faster.”

And even more changes are expected soon. The federal government has put together a national strategy for dealing with AIDS. As part of that strategy, funding is expected to be focused on states and cities with high AIDS rates. Maine has one of the lowest rates in the country.

“We are all but anticipating federal cuts for prevention are on their way,” Bossie said.

Without advocacy groups like the Maine AIDS Alliance, without education from independent organizations like the Red Cross, and without greater funding for prevention, many in the AIDS community fear fewer people in the future will understand the virus and how to prevent it. They worry AIDS will surge.

Lori Jacques, case manager for the HIV/AIDS case management program at St. Mary’s Regional Medical Center in Lewiston, said she’s already seeing greater numbers seeking her help with doctors, medication, housing and support services. Twelve years ago she had 44 clients. Now she has more than 90. She believes that’s due to increased testing, AIDS patients who are living longer and more people getting the disease.

The number of people living with HIV/AIDS in Maine has risen steadily since the early 1980s. In the past 10 years, Maine has seen an average of 87 more HIV/AIDS cases per year.

“There’s more work to be done,” Jacques said.

Those left in the AIDS community are trying to do that work. Western Maine Community Action has applied for — and was recently granted — the ability to set up a needle exchange in Lewiston-Auburn in an effort to reduce the chances of people getting HIV from sharing dirty needles. In its last act as an organization, the Maine AIDS Alliance will grant about $20,000 to study what Maine has for AIDS services now and to make a plan to get the state the services it needs.

And individuals like Garette will keep working to get the word out about HIV/AIDS.

After 25 years with the virus. Garette is sometimes healthy, sometimes not. He has a team of doctors supporting him and two mini-Dachshunds to go home to at night. He knows people who think they’re invincible to AIDS, and he tells them different.

Soon he’ll tell them as Eric James Clifford, not Brandon Garette. That time is over.

“I’m taking that name back,” he said.

ltice@sunjournal.com

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http://bangordailynews.com/2011/07/05/news/hivaids-30-years-later-increase-in-cases-drop-in-funding-raises-concerns/ printed on September 19, 2014