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Bill
Rydwels is 78, but he hasn’t celebrated his birthday since 1985. 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 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’ 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 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.  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’ “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’ 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. 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.” 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?’ 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.” More Information on US Health Issues Copyright
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