Much has changed since June of 1981, when the U.S. Centers for Disease Control and Prevention reported the first cases of what later came to be called acquired immunodeficiency syndrome, or AIDS.
Most importantly, says infectious disease specialist Dr. Robert Pinsky of Ellsworth, being infected with HIV, the virus that causes AIDS, is no longer the death sentence it once was.
Spread primarily through contact with blood, semen and other body fluids, untreated HIV destroys the human immune system, opening the door to deadly opportunistic infections and a form of cancer known as Kaposi’s sarcoma.
Early on in the HIV-AIDS epidemic, a newly diagnosed patient could die within a few months. It was often an ugly, painful and frightening death, accompanied by dramatic weight loss and mental changes. By the early 1990s, medications had been developed that slowed the progression of the disease, but the pharmaceutical regimen was complicated and expensive. Now, a new generation of antiviral medications has simplified HIV management and improved the prognosis dramatically.
“It is really a very treatable condition now,” said Pinsky. People who are diagnosed early and given appropriate antiviral medications now have a healthful life expectancy similar to that of someone without HIV, he said.
Pinsky has been practicing in eastern Maine since moving to the area from Connecticut in 1989. He remembers when the first few AIDS patients came through his door. Mostly, they were young, gay men who had moved away from Maine, been infected by their sex partners and returned home to die in the care of their devastated families.
But in some cases, he recalled, his patients were estranged from their families — due to their sexual orientation, their lifestyle and their poorly understood diagnosis — and lacked any kind of support network to help them through the final days of their lives.
“It was like being diagnosed with untreatable, late-stage cancer,” he said — only worse, because of the fear, stigma and social isolation associated with the disease.
Now, thanks to 30 years of ongoing research, more effective medications, a massive public education effort and diminishing social prejudice, Pinsky said, people with HIV-AIDS are able to lead nearly normal lives.
But living with HIV-AIDS is still no picnic. It entails a lifetime of medications, blood tests and vigilance. Pinsky said people with HIV are more likely to die of heart disease, stroke, cancer or liver disease than of the devastating infections that once typified the disease. That’s because the virus, even when effectively managed, appears to raise the risk of developing these chronic conditions earlier in life.
HIV-AIDS also changes intimate relationships and affects career decisions.
For Sharon Paul of Hermon, the diagnosis in 2003 came as a complete shock.
“I wasn’t a high-risk person. I got it from a man I was dating,” she said. “I didn’t know he was infected. I thought I could trust him, but I was wrong.”
Paul, now 45 years old, had experienced some vague, lingering symptoms — a sore throat that wouldn’t go away, a persistent rash. After weeks of guesswork and unsuccessful treatment, her health care provider suggested she get tested for HIV.
“I didn’t think it could be that,” she said. “I wasn’t the type.” But she agreed to the mouth swab test and prepared to wait a week or more for the result. (HIV results now are available in about 20 minutes.) When the report came in, the news was bad.
The day before she got the call from her clinic, Paul received a letter from the Red Cross. A month or more before, she had donated a unit of blood. The letter said routine safety testing had found HIV in her blood.
“All kinds of things went through my mind,” she said. “I was angry. I was depressed. I wanted to kill him [her former partner]. I wanted to kill myself.”
Instead, she found a counselor who specialized in working with people with HIV-AIDS. She attended a special camp program for newly diagnosed patients. She worked with her doctor to establish an effective medication regimen. And, over time, she came to terms with her diagnosis.
“I finally got to the point where I felt like I could be okay with this disease,” she said.
It took Paul a year to tell the members of her family. She was worried how they would react, but despite their shock, she said, they have remained loving and supportive. Her close-knit community also has rallied around her.
“I feel very lucky to have the support of my family and my community,” Paul said. “I know people who have been shunned because of this diagnosis.”
But her diagnosis led her to give up her dream of becoming a public school teacher, fearing suspicion and backlash from students and parents if word got out.
Paul is now 45 and healthy. She works as an HIV educator at Eastern Maine AIDS Network in Bangor. The nonprofit organization is dedicated to preventing infection and helping those who are infected. Her job takes her to classrooms, jails, medical practices, homeless shelters and other settings.
She teaches people about the virus and how it is spread. She teaches them how to use a condom; how to say no to unprotected sex; to never, ever share a needle.
“I always throw a little bit of my story in with it,” she said. “I think it helps to put a face on this disease, so people know I’m not just someone who has read a lot about HIV. I’m a person who’s living with it.”
At the Maine AIDS Alliance, a statewide advocacy organization, executive director Andrew Bossie, 27, says no one should be complacent, personally or politically, about HIV-AIDS.
“I come from a generation that does not know a world without AIDS,” he said. “But we did not grow up being hit over the head with the images of the early disease.”
Bossie said ongoing HIV-AIDS education and prevention efforts are essential, but federal funding has not increased in 10 years. National health care reform and a new National HIV-AIDS Strategy released last summer by the Obama White House will help, he said, although they could have unintended consequences for Maine people with HIV-AIDS, including loss of coverage under Medicaid and loss of program funding due to a focus on high-prevalence urban areas.
“So much has changed, medically, societally, politically and economically,” Bossie said. “But we all need to remain vigilant.”