WALNUT
CREEK, Calif. — Not long after Bob Reed learned in 1986 that
he had AIDS, he watched 20 of his friends die from the disease
as it ravaged his body and he battled to survive.
Today,
as he sits in his Saratoga, Calif., home feeling better than
he has in years, he ponders a question no one can answer.
"Why
did I make it and other people didn’t?" he asks.
"There’s a part of me that has a little bit of survivor
guilt."
As the
epidemic enters its fourth decade, Reed, 57, is among a
growing number of people who are living with HIV or AIDS into
their 50s, 60s, and beyond, surviving with a new generation of
medications that have greatly increased life expectancy.
Before
the mid-1990s, three-quarters of people infected with HIV, the
virus that causes AIDS, died within 10 years. Now, for those
who get early diagnosis and prompt treatment, nearly normal
life spans are possible.
About
1.1 million American adults and teenagers were living with HIV
infection in 2009, and 17 percent of them were 55 or older,
according to the latest estimate.
Still,
aging with HIV has unique health challenges. Some people
grapple with chronic conditions typically seen in those who
are 20 years older — heart disease, bone loss and kidney
damage. Others deal with premature aging of an immune system
that has fought the infection for years.
And
scientists are just beginning to explore the long-term effects
of a complex cocktail of HIV medications, including how they
interact with other drugs that aging people often take.
Despite
the challenges, many who have worked with HIV-infected people
for years — and seen so many die — say aging with AIDS is
survival.
"This
is a wonderful problem to have," said Alvan Quamina,
executive director of AIDS Project East Bay.
Reed
spent nearly half of his life assuming he was about to die.
He had a
stroke in 1994 and now has heart disease that led doctors to
install two stents in his arteries.
His
toughest year came in 2005 when a painful stomach infection
caused him to vomit almost daily and the 6-foot-1 former nurse’s
weight dramatically dropped to 130 pounds. He had a feeding
tube in his chest for months.
"He
spent much of the year near death," recalled Phil Hofford,
his partner of 21 years. "We were pretty much making
final plans a couple times during that period."
It wasn’t
until 2009 that a newly available medication resolved his
stomach infection, "and saved my life," Reed said.
In
November, he felt well enough to start working again. He now
does HIV test counseling at the Billy DeFrank LGBT Community
Center in San Jose, Calif., and weighs a healthy 182 pounds.
"He’s
coming back to life," Hofford said. "Suddenly he’s
waking up, like Rip Van Winkle."
Yet
their home is a constant reminder of the ravages of the
disease.
Its
previous owner took in people who had AIDS during the early
days of the epidemic. More than 20 people died in the
single-story house near the San Jose border. But Reed and
Hofford consider living there uplifting.
"To
me, it’s pretty awe-inspiring to know what was going on in
that house," Hofford said. "There has been more love
in that house for the people that passed on than most houses
see in a lifetime."
Reed
said he has no idea why he survived when so many others did
not.
"Whenever
my T-cells (white blood cells that help the body fight
disease) were the lowest and hope was the least, a new
medication would come out," he said. "I’m just one
of the luckiest people I know."
Those
who look at Joey Wever these days would never guess he has
HIV.
The
63-year-old Oakland, Calif., resident learned he was infected
in 1996, after an eye doctor noticed his eyes were damaged and
asked if he had been given an AIDS test.
"I
lost about 40 percent of my peripheral vision on the right
side," said the former X-ray and ultrasound technician.
Wever
vividly remembers driving home after testing positive and
thinking he had maybe five more years.
He was
bedridden for nearly a year and neuropathy damaged his hands.
But by
2000, he had improved enough to take a full-time job with the
city of Berkeley, Calif., as a social worker for Meals on
Wheels. He was so busy, however, that he neglected his regimen
of pills every eight hours.
He
developed a resistance to the medications and at 5 feet 8,
watched his weight plummet from 155 pounds to 128.
"I
saw my reflection on glass and I even scared myself," he
said.
His
doctor changed his medications and his health improved, but
his life really turned around when drugs known as protease
inhibitors came out.
"I
feel so energetic and I’m more involved in the
community," he said during a recent interview in his
apartment, as his four colorful lovebirds chirped away.
Today,
Wever cares for his ailing 95-year-old mother, does volunteer
work with a number of health and community organizations, and
is active in El Grupo, a support group for Latinos with HIV.
His good
friend Faye Combs has watched his transformation. She was
taken aback by how healthy he looked about a year ago.
"I
said, ‘Boy, you are a handsome dude,’" she said.
"He had put the weight back on and he just looked great.
He just doesn’t give up."
To keep
his infection in check, Wever takes four pills together, twice
a day — a big improvement from a thrice-daily regimen that
often sickened him.
The
medications for those infected with HIV have greatly improved,
but questions remain about the long-term effects.
"Most
of the studies were initially done on much younger patients
because that’s who was more likely to be infected,"
said Dr. Michael Horberg, Kaiser Permanente’s national
director of HIV/AIDS.
"So
we don’t know how all the antiretrovirals are going to work
as patients get older and have been on these meds cumulatively
many more years."
The
epidemic is by no means over: In 2011, nearly 50,000 new HIV
infections were identified in the United States and more than
32,000 people were newly diagnosed with AIDS, according to the
latest national Centers for Disease Control and Prevention
report.
The
early aging of people with HIV may not lead to more gray hair
and wrinkles, but it becomes apparent in their blood and
immune systems, said Dr. Mark Holodniy, an infectious disease
professor at Stanford University and director of public health
surveillance for the Department of Veterans Affairs.
"And
even when people are on effective treatment and controlling
the virus," Holodniy said, "there is still an
ongoing inflammatory response in the body that seems to wreak
havoc. Some of the problems that you might expect in people
that are 60 or 70 years old, you’re now seeing in people
that are 40 or 50."
Advocates
urge the public not to forget the older generation, even as
attention and resources are devoted to preventing HIV
infection among the young.
Now that
they are feeling healthier, Wever and Reed must decide what to
do with the rest of their lives.
"I
never expected to be around this long," Wever said.
"Now, how do I live with what I have left? We’re going
to be around, and hopefully we’ll be able to
contribute."