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Video: AIDS survivors live longer, lonelier

By Linda Dahlstrom Health editor
msnbc.com
updated 6/2/2011 8:29:53 AM ET 2011-06-02T12:29:53

Bill Rydwels is 78, but he hasn’t celebrated his birthday since 1985.

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On that day all those years ago, his partner of 17 years, Franco Prieto, died of AIDS. Now, every Oct. 9 calls into sharp contrast all that Rydwels lost — and all that remains as he turns another year older.

He has lived to be a senior citizen, something that seemed unimaginable to him back when he tested positive for HIV in 1985 — the first year the test was available. Then, the Chicago man only expected to live another year or so.

Now, his doctor jokes that he’ll live to be 100. But sometimes, on his down days, he says, “The older I get, the more I wonder, why am I still here when everyone is gone?”

Like other long-term survivors of the pandemic that officially began 30 years ago this month with a medical report about gay men who were gravely ill, Rydwels lives with the duality of bonus years of life he never expected — and the loss of myriad friends. Like him, many are facing not only the ravages of old age, but also the cumulative effects of living for years with AIDS, which is now understood to accelerate the aging process.

More than 30 percent of all those with HIV are 50 years old or older, according to statistics from the Centers for Disease Control and Prevention for 2008, the most recent year for which data is available. That’s up from 26 percent in 2006.

Now, geriatricians are incorporated into the care of HIV patients, said Dr. Brad Hare, an expert on HIV and aging and the medical director of San Francisco General Hospital’s HIV/AIDS clinic, Ward 86.

“If you’d told someone that 10 years ago, they’d think it was science fiction,” Hare says, adding that the average age of the clinic’s 3,000 patients is now 46.

A warning shot
Today an estimated 1.1 million people in the U.S. are HIV positive. Another 600,000 have died during the decades of the pandemic, according to the CDC.

But the report that sent a warning shot to the world about a mysterious disease that would come to be known as AIDS centered on just five men, all gay, all in their 20s and 30s, living in the Los Angeles area.

Titled “Pneumocystis Pneumonia — Los Angeles,” the report published in the CDC’s Morbidity and Mortality Weekly Report on June 5, 1981, was only 522 words and recounted case reports of men who had strangely developed pneumocystis carinii pneumonia. One patient had a “ball of yeast” on his finger, remembers Dr. Andrew Saxon, 65, professor of medicine of clinical immunology and allergy at the David Geffen School of Medicine at UCLA.

“It was extraordinarily unusual except in bubble babies [kids who are severely immune compromised],” says Saxon, a co-author of the report.  After that first patient, he began hearing about others with symptoms that were unheard of for men who had been previously healthy. All seemed to be tied to some kind of profound immune problem.

A new test was available that measured patients’ CD4  T-cells, essential to the immune system. “We ran it and they were gone — they were absolutely gone,” he recalls. “We said, ‘Wow. Oh, wow.’ …

“We didn’t realize the massive public health impact. No one did,” he says. “But we realized it was important.”

‘Goodbye to you’
Rydwels remembers the moment in July of 1985 when he learned he was HIV positive. The doctor didn’t even ask him to sit down, he says, he just “shook his head and acted like, ‘Goodbye to you.’”

Prieto died only months later and Rydwels assumed he’d soon follow. Instead, he’s survived to witness deaths of countless friends — and remember. Many of his friends have been gone for decades, but he can see them clearly in his mind’s eye — his partner, Prieto, tending to the orange trees at the Hollywood, Fla., home they shared; his friend Russell, who took him on a road trip to New Mexico after Prieto’s death; and Patrick, a friend who wore orange pork pie hats and whose family slammed the door in his face when he tried to reconcile with them shortly before his death.

Almost every day, Rydwels prays the names of the dozens of friends he’s lost over the years:  Franco, Russell, Patrick C, Chris, Patrick G.,  Thom (Znoy), Bill R., Mark, Bill W.,  Juan, Bill B.,  Victor, Rudy, Ron A.,  Scott W., Ron V., Scott B., Danny, Scott M., Jay, Gary, Stan, Peter,  Charles C., Jim  …

“I have to say their names. How can I not when they were such an essential part of my life?” he says. “No one should be forgotten.”

The first AIDS unit
It’s the fear in the eyes of very sick young men that Dr. Diane Havlir remembers vividly. In 1984, she began working as an intern at San Francisco General Hospital’s Ward 5B, the world’s first AIDS unit, which had opened the year before.

She had countless discussions with patients struggling to breathe with pneumocystis pneumonia about whether they wanted to go on breathing tubes. Then, there just weren’t many good options. “Some of them were able to come off but many didn’t. Those were very difficult conversations to have,” says Havlir, now the chief of the HIV/AIDS division and Positive Health Program at San Francisco General.

At least a third of the patients died soon after being admitted, said Havlir. Many others went home to die.

Nurse Diane Jones worked with Havlir on Ward 5B and had been there from the very beginning. She went to work at San Francisco General Hospital in 1982, fresh out of nursing school, and saw patients with a constellation of mysterious ailments including pneumocystis, Kaposi’s sarcoma and meningococcal meningitis.

Image: Diane Jones and Richard Apodaca
Vasna Wilson  /  for msnbc.com
Nurse Diane Jones, left, greets a longtime patient, Richard Apodaca at San Francisco General Hospital. Jones started working with patients with HIV and AIDS at the hospital in 1982, right out of nursing school. Nearly 30 years later, she's still there.

Back then, the patients were “really sick and were gay men who were diagnosed with this thing that was freaking everybody out,” remembers Jones. “It was a communicable disease and the staff didn’t know what risk it was to them. … It was incredibly stigmatizing.”

Jones, a political activist and a lesbian, says she was drawn to patients with AIDS because she knew many of them were targets of homophobia as well as the stigma of AIDS. “Homophobia and AIDS phobia all got mixed up together. We didn’t know where one ended and the other began.”

In what Havlir calls the “battle days of AIDS,” the now-standard universal precautions of wearing gloves when treating patients and disposing of needles in protected containers weren’t in place. Jones says she and many others had the kind of bravado of first responders who rush into a burning building. She dealt with any fear she had of becoming infected through sheer denial.

“I had a needle stick and then had a moment of fear but quickly repressed it,” she says.

Both she and Havlir say they were too busy taking care of patients to worry much about themselves.

“If you know how to define courage, we saw courage,” says Havlir. “We saw patients with an incredible fight to stay alive and with their loved ones.”

‘I never thought I’d  make it this long’
The CDC doesn’t track how many people who were HIV-positive are still alive today, but Hare, 41, says he believes the numbers are “pretty small.”

“We definitely have some patients who have been known to be HIV positive for 20-plus years, but relatively few,” he said.

Hare doesn’t know exactly why some have lived for decades when so many others died. “There are cases of a less-virulent virus, but those are pretty rare.  My sense is that it’s more likely to be related to how an individual’s immune system handles the virus. There are some people who can control HIV viral load to very low levels — even undetectable — without medications,” he says. “Generally, those people do have slower progression of HIV, but they do go on to progress over time.”

Richard Wolitski, deputy director for behavioral and social science in the division of HIV/AIDS prevention at the CDC, tested HIV positive himself in the 1990s. His partner, John Piontkowski, died in 1994 and “I never thought I’d make it this long,” he says.

Back in 1996, the life expectancy of someone who was HIV positive (but who didn’t have full-blown AIDS) was 10 years, says Wolitski, now 47. As of 2005, that number had climbed to 22.5 years, primarily due to the use of anti-HIV medications.

‘You didn’t live with AIDS, you died with AIDS’
Tony, Meyer, Charles B., Michael P., Jerome, Michael T.,  Charlie C., Peacock, Bob,  Jerry B., James,  Dennis F., Hugo,  Charles A., Jerome K., Jerry B., Emmett,  Jerry M., Randy …

Prieto was one of the first people Rydwels knew who had AIDS. He proudly recalls him as a self-made man who moved from Colombia with $5,000 and left behind an estate of a half a million dollars from savvy real estate investments. Prieto loved taking care of others, he says, always putting them first and wanting to make sure they were comfortable. If Prieto noticed Rydwels’ laundry needed washing, he’d do it for him. Sometimes he’d bring Rydwels elaborately wrapped presents just because he loved him.

But the summer of 1985, it was Rydwels’ turn to take care of Prieto. The first sign that anything was wrong came when he became disoriented at work and didn’t know where he was. Panicked, Rydwels took him to the hospital where he was diagnosed with a brain infection and soon after suffered a stroke. Rydwels remembers that no one wanted to touch Prieto or bring food in to his room. But he doesn’t blame them: “We were as afraid as they were.”

No one ever told Prieto that he had AIDS, although Rydwels believes he must have suspected it.  “We didn’t want him to know. He couldn’t have faced it. You didn’t live with AIDS, you died with AIDS,” Rydwels says.

Three months later, on the afternoon of Oct. 9, 1985, Rydwels went to a church and “prayed like crazy negotiating — cure him or take him.” While he was there, Prieto died.

Not long after, Rydwels moved from Florida to Chicago, to be near his family for the short time he thought he had left to live. He spent a long time grieving and waiting to die, he said.

But then, one day, a friend told him he needed to start making a life for himself and he began going to support groups through Test Positive Aware Network, an AIDS organization, and meeting others who were HIV positive. He began speaking publicly about AIDS, doing volunteer work to advance AIDS education and routinely visiting sick friends in the hospital.

Slideshow: 30 years of HIV/AIDS in black America

For years, Rydwels' own health remained steady. He didn’t go on any medications for HIV until he was diagnosed with non-Hodgkins lymphoma in 1996 and his T-cell count dropped him into an AIDS diagnosis. Ten years later, the cancer returned, requiring another round of treatment before slipping back into remission. Now he takes antiretroviral medication for HIV in addition to pills for the age-related maladies of high blood pressure, heart disease, diabetes and high cholesterol.

These days, he still goes to support groups and makes a point to connect with others. While many of his old friends are gone, he’s found new ones.

“That’s the terrible thing of aging — you lose people,” he says, “But as you lose people new people step in.”

Hare, the medical director of San Francisco General Hospital’s Ward 86, says many of his older patients have lost all social support since so many of their peers died. “There’s a lot of depression,” he says.

Some who were diagnosed in the early days of AIDS didn’t think they had to plan for a future so didn’t continue their education or choose a long-term career, he says. One of his patients was told when he was in his 20s that he wouldn’t live past 30. “He had a very difficult time when he turned 50,” he says. “He was saying ‘Why am I here? This isn’t what I planned for.’”

Now, Hare says, when his patients are first diagnosed, he tells them they need to plan for their retirement. “It’s one of the successes of modern medicine.”

Still, HIV may shorten a person’s lifespan by 10 years or so, Hare says. And those with the virus show some signs of aging sooner. “We see heart disease, cancer, kidney [problems] 10 to 15 years earlier,” he says. “Instead of seeing heart disease in people in their 60s and 70s, we’re seeing it in their 40s and 50s.”

Story: Controversial AIDS cure continues to spur hope

But, for the first time in a long while, scientists are again talking about hope for a cure due to advances in understanding how the virus works, the effectiveness of anti-HIV medications and new research in gene therapy , says Hare.

‘Will I see Franco again?’
Randy, Ken K., Fred,  Robert, Ken K.,  Fred, Greg O., Greg T., James S. Joe, James A., Robert, George, Glen, Robert, Jerry B.,  Dennis F., Dennis N., Dennis L, …

Sometimes, on quiet afternoons, Rydwels thinks of Prieto and what their lives would be like if he hadn’t died. He suspects they’d have gone back to Prieto’s home country of Colombia to have a farm, like they’d always talked about doing. There, together, they’d tend to the animals and plants, like they used to do at their Florida home.

Rydwels says he’s grateful for his many friends who check on him, drive him to appointments and support group meetings and try to keep him from feeling lonely. But sometimes, he says, he has down moments.

He never dated again after Prieto died, saying no one else would measure up. “It’d be impossible. I want another Franco and there’s not another one.” After all these years, it’s the simple moments with his partner he aches for most. “I miss sharing the joy of just a bright sunny day, or the flowers in the garden.”

Recently, he jokingly asked his doctor if he’d give him something to sleep where he’d never wake up.

“There are things I wish I knew,” he says, “I joke that the reason I haven’t died is that Franco says [to God] I put up with him for 17 years, give me more time! But if I die, will I see Franco again?”

Meanwhile, he continues to pray the names of all his friends even as he knows that someday his friends will be praying his.

“I have wonderful friends. I know I won’t be forgotten,” he says. “I’m hoping that when my time comes, I’ll be as noble in accepting it as all the people who died.”

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