AIDS TODAY People in Maine with HIV face medical, social challenges

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Fifteen years have passed since David Johnston watched his partner, Sam, die from complications related to AIDS.

In 1987 Sam was diagnosed with HIV. The two men were living in suburban Atlanta, and the virus was starting to make waves across the nation.

“There were still a number of us who thought it wasn’t going to be as bad as it was,” Johnston, who now lives in Hancock, said in a recent interview at the Down East AIDS Network in Ellsworth. “I really wasn’t terribly concerned until my partner tested positive. Then it hit home.”

Sam’s weight began to drop. His drug regimen became more extensive and eventually made him sicker. His face developed lesions from Kaposi’s sarcoma.

When Sam died in 1991, Johnston told his parents it was cancer. He didn’t want them to know the truth because it meant facing his own truth.

“After [Sam] tested positive, I automatically assumed from that point in time that it was very likely I was positive,” Johnston said. “But I didn’t want to get tested because there was still hope that perhaps I wasn’t infected.”

He clung to that hope years after Sam died.

In 1996, though, Johnston fell ill with pneumonia. His T-cell count dropped to 90. He knew the diagnosis before the doctors did.

“I was 38 when I tested positive, and I wasn’t sure I was going to live to see my 40th birthday,” he said.

Now 48, Johnston estimated he has been living with HIV for more than two decades and said, “I’m grateful for each year.”

As World AIDS Day approaches – it has been held every Dec. 1 since 1988 – Johnston is a perfect example of how much has changed regarding the state of HIV-AIDS in Maine, but also how much has stayed the same.

On the positive side, Johnston and many others are living much longer thanks to more effective medication and better access. Testing for the virus has become remarkably easier, too, shifting focus to preventing new cases.

But stigmas about HIV-AIDS persist, such as the notion that it’s only a “gay” disease or that it doesn’t reach Maine. Inadequate education only furthers those attitudes.

Better treatment has helped patients live longer, but it also has reduced fear and has decreased the attention surrounding the virus and disease.

Funding has dried up, too.

“Federal funding [for HIV-AIDS] has leveled off in the last few years, but at the same time funding for abstinence-only education has skyrocketed,” said Dr. Dora Anne Mills, director of the Maine Center for Disease Control. “In public health, we try to do what is driven by science, and this ideology-driven sex education doesn’t address HIV-AIDS.”

Now that the disease is a quarter-century old, the biggest challenge regarding HIV-AIDS awareness seems to be complacency.

“It has gone off people’s radar,” said Sharon Pree, interim executive director of the Maine AIDS Alliance, a statewide advocacy organization. “People see it as chronic and something they don’t have to worry about, but meanwhile, we’re seeing the number of cases increase.”

Living longer, but …

Linda Hazelton, 47, of Howland has been living with HIV for at least 15 years, but she admitted it’s probably closer to 20.

She likely contracted the disease in 1984 from a blood transfusion, but it wasn’t diagnosed until 1991. By then, she already had passed the disease to her husband.

Hazelton’s husband died last year (from a heart attack, not from AIDS), but she remains relatively healthy.

“When I was first tested [in 1991], I was told I had six months to live,” she said in a recent interview. “I’m some glad they were wrong.”

At one point, Hazelton took 42 pills each day to treat her HIV. Now she takes only three. She doesn’t hold a paid job, but she still spends many hours volunteering and serves on several HIV-AIDS-related committees.

Similarly, Johnston has devoted a large part of his time to helping others who are HIV-positive and dispelling misconceptions about his disease.

“I try to be open about my status so that people know ‘yeah, there can be someone living in small-town Hancock, Maine, who is HIV-positive,” he said.

Hazelton, Johnston and many others represent how treatment of HIV-AIDS has evolved over the years.

There was a time when the disease was tantamount to a death sentence. Now people are living more than 20 years from the time they are infected.

“Several years ago, there was limited treatment and doctors essentially were shepherding people to their death,” said Dr. Peter Ossanna, president of the medical staff at Maine Coast Memorial Hospital in Ellsworth, who has been treating HIV-AIDS patients for 15 years. “Then, in 1996, there was an explosion of research and the creation of these drug cocktails, but they had substantial side effects. Now, the drugs aren’t necessarily more effective; they’re just easier and less toxic.”

Johnston said that when he first started taking medication, he couldn’t comfortably be away from a toilet. Now, he has a more effective drug regimen.

“But I still have to take medication every single day,” he said. “There’s no break from that.”

Today, about 1,100 people in Maine are living with HIV-AIDS; another 350 are infected but don’t know it.

The number of new HIV diagnoses each year in Maine has decreased relatively steadily since peaking at 136 in 1988, but in 2005, the CDC reported 58 new cases of HIV, the highest yearly total since 1996.

And because fewer people are dying, the number of Mainers living with HIV or AIDS is at an all-time high.

Stigmas still exist

Hazelton had been living with HIV for several years when a man came to her door one afternoon with a petition to ban gay marriage.

He told her that “those gays carried AIDS,” and that upset her.

“Where do they carry them?” she replied.

The petitioner was confused but continued the conversation about HIV-AIDS and insisted that the disease couldn’t possibly affect anyone around here.

When Hazelton told the man that she had AIDS, he turned and walked away, horrified.

“There are still misconceptions, but there is a lot less ostracism,” Hazelton said. “When I was first diagnosed, I lost my family and I can’t even tell you how many friends. But people who are [HIV] positive need to feel like they can tell people.”

Johnston agreed.

“I think there’s always going to be a certain amount of stigma,” he said. “You still associate HIV with gay men, prostitutes and [IV] drug users, and these are all people who are perceived as the not-so-good people of society.

“But I don’t feel that the stigma is as great as it was 20 years ago.”

Of the people living with HIV in Maine, 84 percent are men, which no doubt fosters the stereotype that it’s a disease of homosexuals.

Men sleeping with men do still make up the largest portion of cases in Maine, 55 percent, but heterosexual women are the fastest-growing population of new infections.

Additionally, 25 percent of new HIV cases in the United States occur among teens, most of whom are infected through heterosexual contact.

Another common misconception is that HIV-AIDS is not a problem in the U.S., only in Africa and other Third World countries.

It’s true that those countries are losing a disproportionate amount of people to the disease, but they also don’t have access to treatment, education or testing.

Johnston admitted that indigenous countries are suffering horribly, but so are many in this country and that can’t be overlooked.

“We really need to get people thinking about HIV more,” he said. “People don’t really think about it all that much. If Washington, D.C., were its own country, it would have the third-highest rate of HIV in the world, but you never hear about that.”

Because it isn’t talked about as much as 10 years ago, funding for treatment and prevention has slowed considerably.

“Maine has fared better than some areas. We offer an HIV waiver for Medicaid, but it’s still not enough,” Dr. Mills said. “And if public schools aren’t allowed to talk about it, prevention becomes the new problem.”

Looking ahead

If the projections are accurate, Johnston is nearing the end of his life.

“They are figuring now that the average life span [for someone infected with HIV] is about 24 years, which drew a little bit of a pause for me because if I really did become positive in 1985 when I think I did, then that means I’m approaching that 24-year time frame,” he said.

Hazelton, too, is past the 20-year mark.

“At one point, I wanted to die,” she said. “But now, I feel like if I can just reach out to one person and tell them that they can live …”

The sad fact is that many in Maine and throughout the country who have been living with HIV-AIDS since the 1980s will die within the next five or 10 years.

Drugs have become better and continue to evolve, but a cure still does not exist.

“Essentially, what is happening now is an ongoing refinement of what we already do and creating better forms of the same kind of drugs,” Dr. Ossanna said.

The drugs also are expensive. Johnston estimated he spends $18,000 a year to fight his virus.

Looking forward, Ossanna said research has begun on new classes of drugs and the creation of AIDS vaccines, but so far, those vaccines have not been successful.

The other piece is prevention of new cases. Just in the last few years, testing for HIV has become simpler and quicker.

HIV testing used to require a blood sample that often took weeks to determine status. Now, tests are done with an oral swab and the results are available in 20 minutes.

Still, not enough people know how easy a test is, said Pree with the Maine AIDS Alliance.

“We’re constantly pushing for routine testing,” she said. “One of the things that’s good about Maine is that we have voluntary testing and informed consent, meaning we’re keeping the emphasis on education.”

The U.S. Centers for Disease Control and Prevention now recommends that all Americans age 13 and up be tested regularly for HIV.

“I had some suspicions about my status, so I took precautions after I found out my partner tested positive, but not everybody does,” Johnston said. “Everyone needs to be responsible for their own safety.”

Johnston knows he can’t get the last 20 years of his life back. He knows he couldn’t stop his partner from dying. He knows his own time is measured.

“I’m just grateful for each year, and I just try to make the best of each day,” Johnston said. “When I was first diagnosed I didn’t really think that I had much time to plan anything. Now, I just look forward to each day.”