Long-term HIV survivor talks about his ups and downs

Health has been a daily issue for decades

It’s likely that in another decade or two, there will be many HIV patients who have health histories similar to that of 53-year-old Michael Shernoff, MSW. But for now, he is fairly unique.

Shernoff dates his own exposure to HIV back to the 1970s. His blood was stored for a hepatitis B study, and when the first HIV tests became available, his sample was tested retrospectively and found positive for the virus.

"I’ve been completely asymptomatic other than blood work," he says. "I started on AZT when doses were lower, after viral loads were over 1 million, and I’ve been on combination therapies since 1996."

Shernoff doesn’t know what to attribute to his longevity; his eldest brother died of AIDS in 1988, and he thinks they were genetically close. "It might be luck," he adds.

Drugs’ side effects have large impact

Although Shernoff has had no HIV-related illnesses, side effects from the medications have had the greatest impact on his quality of life and health.

For example, although he exercises 2-3 hours a day and takes a yoga class each day, he has elevated cholesterol, hypertension, and recently he’s developed type 2 diabetes. He’s also experienced facial wasting and subcutaneous fat deposits on his extremities, Shernoff explains.

"My liver functions are all fine and perfect," he notes. "I stopped using recreational drugs 20 years ago."

Shernoff and other long-term HIV survivors are by default engaged in the largest uncontrolled clinical study in the world because they were the first generation to use combination antiretroviral therapy, he says.

"How are all of the drugs we’re taking going to impact the other drugs we’ll need to take for aging?" Shernoff asks. "And the long-term impact on various organ systems are all undetermined, so all of us are consciously living with an enormous amount of uncertainty."

Shernoff, who counsels HIV-positive patients, says that all of his patients are guardedly optimistic. While they may be healthy now, they don’t know when their virus will mutate and their treatment will begin to fail, he adds.

"So much of my work is helping people tolerate this uncertainty and deal with it in their lives," says Shernoff.

"The generation of men like myself who were in major urban centers, totally integrated into vital gay communities — San Francisco, New York, and Los Angeles — those of us who are still alive are the last remaining members of our friendship groups," he continues.

One of Shernoff’s professional, as well as personal, concerns about the long-term impact of HIV on older people involves the stress of dealing with a serious illness for decades.

"Clinicians assume we should be rejoicing that we regained our health," he says. "But some people wonder why they were lucky enough to be around for treatments when their partner or friends died before the drugs were available; and sometimes, it’s just existential questioning."

So clinicians should acknowledge that being HIV-positive remains stressful and takes an enormous amount of psychic energy and reserve, Shernoff says.

"People have to be coached to be able to totally live mindfully in the present and plan for a future while not expecting it," he says.

Also, patients need to be given an opportunity to define their own quality of life and to make decisions that pertain to the balance between quality and longevity, Shernoff adds.

"People who are athletic and are too burdened by the side effects of diarrhea to be athletic need someone to talk with them about their quality-of-life issues," he explains. "They need to be encouraged to be honest with a doctor and say, I need to switch to a drug that will allow me to do athletic stuff.’"

Another serious issue is how HIV patients react to the lipodystrophy and facial wasting, Shernoff notes.

"People have these enormous paunches and body wasting, and they can’t afford to do surgical things that are not covered by insurance," he says. "The impact on a person’s self-image is very profound. People say, How am I supposed to be dating when I hate my body?’"

Lastly, clinicians cannot ignore the issue of sexuality after an HIV diagnosis. For many of the long-term survivors, they were too ill to be sexually active before the advent of combination therapies, but now they are healthier and are interested in pursuing sexual relationships, Shernoff says.

"The whole issue of disclosure is an enormous one," he adds. "I really urge people to disclose their status early on even if they think it’s just a one-night stand, because if it’s a good one-night stand, it will only get more complicated to tell someone after the fourth or fifth date because the stakes keep going up."

Shernoff spends time in therapy helping patients role-play and counseling them on how to develop disclosure strategies.