Older AIDS survivors face new challenges

Posted at 05/30/2011 10:14 AM | Updated as of 05/30/2011 2:55 PM

SAN FRANCISCO, United States - AIDS nearly killed Lou Grosso 3 decades ago, but that didn't prepare him for the latest news from his doctor: he has heart disease.

Like many older HIV carriers facing problems -- including financial -- they never expected to live long enough to confront, Grosso, 57, also suffers from aching joints, memory loss and nerve pain.

Of the 14 pills he takes each day, only 3 are designed to treat HIV.

Dr. Brad Hare, his specialist at San Francisco General Hospital, keeps track of it all, but Grosso is still worried.

"I've often said to my doctors, 'You're so worried about the AIDS but I'm gonna drop over from a heart attack'," Grosso said. "It bothers me; I'm having a good life and don't want it to be cut short because my body thinks I'm 80."

While many have turned their attention -- and money -- to fighting the epidemic in Africa, experts here are increasingly troubled by a new kind of AIDS crisis.

Some 15 years into the era of protease inhibitors and drug cocktails, the first large group of AIDS patients to go through the aging process is facing a host of unexpected medical conditions, not to mention psychological and financial challenges they never thought they would live to see.

Grosso, who programmed some of the first personal software in the 80s, is amazed that he has survived long enough to learn how to build websites.

But he also worries that his mind isn't as sharp as it once was. He finds himself arguing with colleagues about whether topics were covered in meetings, for example.

"I'll just have no memory of it," he said.

A recent study found that 52% of HIV positive Americans suffer from some type of cognitive impairment. Only 10% of people in the general population, by contrast, experience such problems, according to the CNS HIV Antiretroviral Therapy Effects Research study.

HIV patients aged 55 and older are also 3 times as likely as non-infected 70 year-olds to suffer from a chronic health problem, according to the American Academy of HIV Medicine. Common illnesses include hypertension, diabetes, osteoporosis and cancer.

In the early days of the epidemic, patients in their 20s were dying in overwhelming numbers in Dr. Hare's HIV/AIDS ward.

Today, more than a quarter of HIV patients are 50 years or older, according to the US Centers for Disease Control, and the average age in Hare's 3,000 patient clinic is 47.

"The problems people with HIV face are really changing," Hare said.

"I've heard patients say that it just wears them down. You've been dealing with HIV for 30 years and you finally have that under control, and now you're facing a new raft of medical problems. It seems unfair."

Experts are just starting to tease out which of these illnesses are caused by the virus, which are drug side-effects and which are just natural signs of aging.

Until recently, there were too few people aging with HIV to study.

The challenges posed by the greying of AIDS are not only clinical.

Experts also worry about patients like Vicki Davidson, who was planning to abandon her HIV treatment during a particularly lonely period this winter.

Davidson, 64, contracted HIV in 1986 from a blood transfusion after she was caught in a fire.

She underwent 2 hip replacements at the age of 50 and suffers from severe fatigue.

But what really gets her down is the social isolation -- the days spent at home, the difficulty of connecting with new people.

Like many long-term survivors, Davidson worries that it might seem indecent to complain about the consequences of aging with HIV when for so many years, survival itself was at stake.

"I don't want people to think, 'there's a whiner'," she said, "so I act like it's no big thing. But in my quiet moments, I think it would be nice to have a partner."

Long-term HIV patients are almost 13 times more likely to suffer from depression than other Americans, according to a 2006 study from the AIDS Community Research Initiative of America.

Davidson said she is feeling more hopeful of late, though a question about what brings her happiness draws only a long pause and then laughter.

Older AIDS patients are also more likely to be unemployed or short on savings than their healthy counterparts, according to a study from the Terrence Higgins Trust.

Homer Hobi, 65, recently went back to work as a realtor at an age when many of his friends are retiring.

In the 90s, he gave his home, business and a chunk of money to his ex-wife, despite the protestations of his divorce lawyer.

"There was no doctor that I talked to in '96, '97 that thought I'd be alive in 10 years," he explained.

Though stomach issues sometimes keep him homebound, Hobi said he is glad to be back at work, if only for the social outlet it affords him.

Lou Grosso has also had his share of financial difficulties -- he even spent some time on the street.

Now he lives in subsidized housing for people with AIDS and spends his time coding, participating in clinical studies and volunteering with younger patients.

Grosso, who loves science fiction books because they depict worlds where anything is possible, sees himself as a guinea pig in the service of generations to come.

"Why am I still here?" he said. "There's a reason why I'm still alive, and I want someone to find out why that is."