May 19--Mark Garrett is alive, which, among his group of friends from 25 years
ago, puts him in the tiny minority.
That Garrett is 58 and living with HIV puts him in a growing demographic: People
with HIV are aging, as a group.
Although younger people still represent the majority of HIV patients, the
profile is shifting: The Centers for Disease Control and Prevention estimated
that in 2009, people 50 and older represented one-third of people with HIV in
the U.S. By 2020, they'll constitute half, based on CDC data.
The shift results from both longer survival with the virus, made possible by
medications, along with new infections among older people.
In Garrett's case, it's been a matter of survival.
Before his diagnosis in 1988, the Spokane native had moved from Alaska, where he
worked for a big oil company, to Northern California, where he worked in water
treatment and built a home in the redwoods.
He suffered no symptoms, but he knew as a sexually active gay man he needed to
be tested. The positive result was soon followed by an AIDS diagnosis.
"I had my ideal life," Garrett said. "And then bazinga. But we didn't give up
hope, and I had my posse. We had 12, 13 guys, we'd meet for Thanksgiving, and it
almost became a joke: Who's going to be the next to go? It's down now to me a
good friend of mine down in San Francisco who are the survivors of our original
Among the dead is Garrett's then-partner, who died in 1994.
More than two decades later, Garrett is working as an advocate for others with
HIV through the Spokane AIDS Network, looking forward to projects at the north
Spokane home he shares with his partner of 17 years, spending time with his new
dog, Aiden, left in his care by a woman who died recently of AIDS.
But Garrett lives daily with the aftermath of the virus and its treatment. His
immune system has been damaged. While the drug regimen for some people with HIV
amounts now to just one pill a day, Garrett still takes 15 to 18. Five fight the
virus itself. Two or three treat direct side effects of the first five.
The rest are to treat what Garrett called the "aging process" -- for him, like
many older people who've been living with HIV for years, it seems to have
accelerated. Garrett has bone density loss, degenerative disk disease, early
indication of kidney disease, prediabetes, arthritis, high cholesterol.
"They say if you have a compromised immune system, you have AIDS, you're
probably aging about 10 to 15 years faster than others," he said.
Physically and mentally, Garrett feels a lot better than he did before he
started taking the medications that pulled him from the edge of death. Because
his "viral load" is down to undetectable levels, he's much less likely to
transmit the virus. He's glad to be able to advocate on behalf of others with
"But I live every day like it's my last," he said. "I think everybody should do
that, in a sense, so you get the fullness of life. I do a lot of traveling, as
much as I can afford. ... My bucket list is going to get used up before I end up
on my death bed."
Before the introduction of life-preserving drugs in the mid-1990s,
"opportunistic infections" usually ended AIDS patients' lives. Now, for many
people, living with HIV and AIDS is more like living with a chronic illness --
or, especially for the older Americans who are infected, a collection of chronic
"Most of us think people (with HIV) can have fairly normal life span, but as far
as long, long term and what happens to patients, we're still kind of
experiencing that," said Dr. Daniel Coulston, who treats people with HIV at
Rockwood Clinic. "Someone who develops diabetes and HIV -- is it going to be
more aggressive? Are they going to be at higher risk for more potential side
effects? ... They're still slowly understanding all that."
Cardiovascular disease, kidney and liver disorders, bone weakness and fractures
and certain cancers seem to occur at higher rates among older people with HIV
than among their peers who aren't infected, according to a 2012 paper by
researchers from the CDC and the Johns Hopkins School of Medicine.
In general, HIV patients face higher risk of those normally aging-related
conditions for three often-intertwined reasons, according to the 2012 article,
published in the American Journal of Public Health:
--HIV itself contributes to other chronic conditions, partly because of the
inflammation that results from the virus's replication in the body.
--HIV drugs are sometimes toxic.
--Adults with HIV are more likely to have other risk factors for health
problems, including hepatitis B and other infections, and are more likely to be
smokers or obese.
Coulston treated Spokane's first HIV patient before anyone knew what HIV was.
"I've been at this since '81," he said. "I see what HIV has done to people over
the years. The fact that people are even living this long to experience more
problems is a good sign."
These days it's relatively simply to treat HIV itself, Coulston said. Although
the virus has mutated to resist multiple drugs in some people, the majority of
patients do well, he said.
"The micromanagement of their other health issues is what's more important,"
When AIDS meant you were likely to die and effective treatment was something you
dreamed about, Mark Garrett and his friends, like many people, took desperate
measures to try to live.
It was the late 1980s and early '90s. Treatments were slow to develop. The first
government-approved treatment -- azidothymidine, or AZT -- was "horrible," he
said, and seemed neither to improve nor extend life.
They drank hydrogen peroxide in an attempt to cleanse their blood. They burned
their skin with photographic acid to try to activate their immune systems. In
retrospect, Garrett said, they were trying to maintain hope.
It "seems like really wacko stuff," he said. "It was just, 'Hey, I gotta do
It was amid those desperate conditions that scientists in 1996 identified a
class of drugs called protease inhibitors as the "missing component" in HIV
"It was pretty much at the nick of time for many of us that were on the edge of
losing it," Garrett said. "I was one of those."
Protease inhibitors stop the virus from replicating, Eastern Washington
University researcher and assistant professor Bipasha Biswas explained to a
roomful of students at a recent HIV and AIDS conference at Spokane Community
College. With less of the virus in the bloodstream, the immune system can grow
stronger. She gestured toward panels from the AIDS Memorial Quilt hanging in a
room at the college, commemorating people who'd died. If they'd lived long
enough to receive them, she told the crowd, protease inhibitors might have saved
"People started seeing this dramatic effect: 'Wow, I don't need to die of AIDS
anymore,'" Biswas said.
But protease inhibitors came with their own problems, some of which endure for
older people with HIV. Along with nausea, diarrhea, headaches and other side
effects, the drugs caused lipodystrophy -- the redistribution of body fat,
causing wasted-looking faces and humped backs -- and contributed to a higher
risk of cardiovascular problems along with diabetes, kidney stones and diabetes.
These days, HIV drugs are easier to tolerate, Coulston said. Patients suffer
less from the "overt toxicities" -- the nausea, the diarrhea, the headaches.
However, "there's certainly other toxicities that occur," Coulston said. "I
mean, patients on HIV therapy are five times more likely to develop diabetes, so
that's a huge issue."
But while living for 20 years or more with HIV and its treatments has taken its
toll on some of his patients, he said, "a majority of these people are fairly
active, still employed, still working."
Others are trying to resume lives, or build anew, despite HIV.
Ann Bruce is one of three caseworkers who work with people with the virus at the
Spokane Regional Health District, helping ensure they take their medication --
reducing their viral loads -- and connecting them with doctors and counselors
along with substance-abuse, housing and financial-assistance programs.
The health district serves 182 clients with HIV, half of whom are 45 or older.
"One of the challenges is not having expected to live to this age," Bruce said.
"They will have been on Social Security Disability, typically, and they would
like to get off Social Security Disability and join the work force. Well, it's
rather difficult for anybody that age to rejoin the work force, but especially
when you haven't been working for the last 20 years or more. That's a huge
Bruce and other caseworkers refer clients to community college programs that aim
to help residents return to work, a state program for job-skills testing, and
other organizations that provide help creating resumes -- "all those kinds of
things that they never thought they'd need," Bruce said.
Although the health district's HIV program is open to any resident, most clients
live on low incomes. Besides HIV, they tend to face other struggles, Bruce said,
including substance-abuse and mental health problems. Of the latter, depression
is most common, she said.
Feelings of isolation among older people with HIV often stem from the stigma
that remains around the virus.
"They might not have told anyone throughout their life, and that alone is
isolating," she said. "They may have been kind of given up on by their families
and their friends if they did disclose (their HIV status) earlier in their
Garrett, the client advocate at the Spokane AIDS Network, said romantic
relationships can be hard to come by for older people with HIV. He hears it
often from participants in the organization's support group, he said: They're
lonely. They want to date.
"What we have is a population that became disabled for various reasons, and now
that isolation, that not fitting in, is being amplified," Garrett said.
Spokane resident Dale Briese, 49, remembers a period in 1995 when he attended
funerals on 17 of 18 consecutive Fridays.
Briese said he feels like he's emerged from a war zone. Another way he views his
survival, amid so many deaths: "We're all just trees in the forest standing, and
the fire has come through. And I'm the tree, and there's singes up the base."
As someone who's far outlived the two-year prognosis he received with his HIV
diagnosis in 1985, mental-health care has been vital, he said. Therapy has
helped him address his ongoing life with the virus and the trauma of those early
years, he said.
Briese recently went to SCC to look at the AIDS quilt. The panel he created to
honor his first partner was among those on display. They received their
diagnoses together, six days before Briese's 21st birthday.
He worries that if HIV gets labeled a chronic illness, people could forget about
how serious it was and remains. He worries that the AIDS quilt will be forgotten
-- that HIV deaths will be classified as cancer deaths, for example, even when
the virus precipitated the cancer. He fears that funding for HIV prevention and
treatment will dry up.
For his part, just into middle age, he suffers fewer physical ailments than many
of his peers. He declined to take HIV drugs until about 10 years ago, focusing
on holistic strategies -- switching to a vegetarian diet, losing extra weight,
working out regularly -- to maintain his health.
Briese works as an administrative assistant in Volunteers of America's
community-housing program. He wants to continue helping others in the community,
"I'm going to ride this out," Briese said. "I'm in life. I want to be living."
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