Posted on Mon, Jan. 03, 2005
Americans with AIDS living longer, but it's not easier
By MARY SANCHEZ
Kansas City Star
KANSAS CITY, Mo. - Americans with AIDS are living longer than ever,
defying the virus' early image as a quick death sentence.
But this is living long term with AIDS:
Taking a fistful of pills each day, pills that can cause vomiting and
diarrhea so extreme that leaving home is impossible.
Losing health insurance as physical strength ebbs and the ability to
work ends.
Wearing out the sympathy and patience of friends as health
deteriorates but life goes on.
"It's very frustrating for those of us who have been positive (with
the HIV virus) for some time," said Don Carrel of Mission. "People think,
`Oh, you have HIV, well you can just take a few pills and be fine.'"
Since 1996, more effective drugs have curbed AIDS deaths, but not the
spread of the AIDS virus in the United States. That has remained relatively
constant, with about 40,000 new HIV infections annually.
Today, more Americans than ever are living with AIDS - at least
385,000 people. The Centers for Disease Control and Prevention estimates the
number of Americans with either HIV or AIDS at 850,000 to 950,000.
Some, like Dan Campbell of Kansas City, have been living a very long
time.
Campbell has been HIV positive for 15 years and has had AIDS for 12.
His world keeps shrinking. Every few years, as finances tighten, he
moves into a smaller place, shedding more possessions. Now he lives in a
midtown studio big enough only for a bed, a television and a few personal
items.
"I have a few friends, but not very many," Campbell said. "Most
anybody who has cared for me has gotten tired of the process. People just
get worn out."
He stretches $600 a month from Social Security to cover his expenses.
Medicaid helps pay for his medication, 14 kinds of pills.
Campbell, 53, hasn't been healthy enough to work for more than six
years.
He has no living relatives. The last, his mother, died in 1975.
"It's dumbfounding," Campbell said. "I've now outlived everyone and
everything."
An unpublished, ongoing study by the CDC found that before the
availability of more effective AIDS drugs, the average time from infection
with the virus to developing AIDS was about nine years.
And the time a person usually spent with AIDS before dying was 1.5
years, said Karlie Stanton, a CDC representative.
Those time periods are now extended.
People now often live with the virus for at least 11 years before
reaching an AIDS diagnosis. And the time from being diagnosed with AIDS to
death is about six years.
That people are living longer with AIDS is obviously a good thing,
said Kathleen Cooper, the executive director of Kansas City's Good Samaritan
Project, which celebrates its 20th year in 2005.
Cooper began working at Good Samaritan in 1993.
"In those first few years I would go to so many funerals," she said.
But then people began living longer. The funerals tapered off.
Now, the funding has as well.
"It is harder and harder to raise money at events," Cooper said.
Good Samaritan manages the cases of about 450 clients, overseeing
back-to-work programs, transportation to and from doctor's appointments and
help getting medicine and groceries.
In recent years, the rate of new infections has grown the most in
black and Hispanic communities.
African-Americans accounted for more than 50 percent of new HIV cases,
according to one study by the CDC.
But cultural taboos in those communities make preventing the disease
difficult, she said.
Fear of being labeled homosexual causes gay and bisexual black and
Hispanic men to hide their sexuality from wives and girlfriends. But the men
might then infect the women with the virus after sexual contact with other
men.
A CDC study in 2003 found that HIV infection rates are up about 5
percent in 29 states compiling data. Many of the new infections are in the
black and Hispanic communities.
But experts also think the rate of new infections may be rising again
in the gay white male population as well.
"AIDS is still here and it affects every population," Cooper said.
Patients who have lived a long time with the AIDS virus credit their
relative good health to many factors.
Several spoke of having an "intentionality" about living.
Campbell tries not to focus on the negative. A former minister, he
attends church regularly and volunteers at a food bank for AIDS patients.
Carrel has continuously sought other reasons for living, volunteering
his time to put meaning to his existence.
When he was first diagnosed in 1986, he considered suicide. Driving
home from the Topeka doctor's office where he learned he had HIV, he
contemplated running the car off the highway.
But Carrel realized he wanted to see his youngest son, then 8,
graduate from high school.
He had no symptoms for years.
In May 1995, his son graduated from high school. By November of that
year, Carrel was in the hospital, near death with pneumonia. He was
diagnosed with AIDS.
The disease also began claiming his friends.
"At one point in my life I literally had to throw my address book
away," Carrel said. "I couldn't turn a page without finding someone who had
died."
But Carrel, 53, decided to do volunteer training about the disease at
area high schools. He estimates he has spoken with more than 100,000
teenagers about the dangers of unprotected sex.
The longer Carrel lives with the AIDS virus, the more diseases he
develops. The latest threat is anal cancer. His immune system is too weak
for chemotherapy or radiation.
He found a doctor in San Francisco who specializes in treating AIDS
patients developing this form of cancer. After consulting, Carrel opted for
a surgical procedure akin to searing his insides.
He also is participating in a study, as part of the control group, of
new drugs to treat AIDS patients.
He gets regular massages, has a loving partner and tries to control
the stress in his life.
"I really don't make long-range plans," he said. "I operate my life
day to day on how I feel today and what I want to do today."
>Why people live longer now
With what? This is more of your abject cognitive dissonance.
If there is no HIV, or it is harmless (which do you subscribe
to?)--then people will be living longer just because. But then, if you
believe it is because of the toxic drugs that people die, then they
are taking MORE of them, shouldn't the death rate have climbed
dramatically in places where ARV is available?
By contrast, the only way your argument makes sense is to presume HIV
exists and causes AIDS. Then you can argue whether or not the 93
change in the definition had any effect on survival rates. As has been
explained previously, it doesn't.
George M. Carter