Patient survives AIDS ordeal in rural west
Doctors say providing care is difficult
By TRAVIS PURSER
Express Staff Writer
For whatever reason—prejudice, a lack of education, a perceived need
for confidentiality—people in the rural west tend to have a dangerous
don’t-ask-don’t-tell attitude about the AIDS and HIV epidemic.
True, there may be less to talk about here than in urban areas. Get away
from big cities and the number of infected people plummets. In Blaine county and four
surrounding counties, for example, the Idaho Department of Health and Welfare lists 42 HIV
cases.
But for those few, a sluggish healthcare system, some say, threatens lives
when doctors fail to quickly diagnose the disease. Healthcare professionals say
patients’ fears of being stigmatized is part of the problem, causing them to delay
seeking treatment.
Then there’s the notorious small-town gossip that wreaks havoc on the
lives of patients and their families. Friends and neighbors give them the cold shoulder.
Their children get picked on. So, patients cover long distances to seek treatment outside
the areas in which they live. And that, epidemiologists say, cheats their ability to chart
the ebb and flow of the disease.
From
left, Dr. Harold Jaffe, National Center for Infectious Diseases; Dr. John Osborn, Veterans
Hospital physician; Sarah Allen, RN, Idaho Bureau of Communicable Disease Prevention; an
anonymous AIDS patient from rural Utah; Dr. Kristen Ries, University of Utah professor of
medicine. Express photo by Willy Cook
During Saturday’s AIDS symposium in Sun Valley, sponsored by the
University of California at San Francisco, one AIDS patient from rural Utah described what
it was like for him when his first symptoms began in 1998.
Speaking anonymously to protect a family member, he told nearly 200 AIDS
healthcare professionals and journalists in Sun Valley Company’s Limelight Room that
he became ill 10 months before doctors in Utah finally diagnosed him with AIDS. By then,
he said, he was nearly dead.
During the onset of the disease, he began having severe sinus problems,
for which doctors gave him "every kind of allergy medicine made."
Then, in June of 1998, the symptoms got worse when he began having
"severe breathing problems" during a river rafting trip.
"I made it back alive," he said, "went to the doctor and
was diagnosed with having bronchitis, given a 10-day supply of [drugs] and sent
home."
A week and a half later, he was back in the hospital. Doctors X-rayed his
chest and discovered he had bilateral pneumonia, which is a common illness at the onset of
AIDS, he said. But that was something he discovered through his own research.
"I went home that day and got on the Internet," he said. "I
looked up bilateral pneumonia, and every connection led to HIV."
According to the patient, however, his doctor refused to give him an AIDS
test.
"He said I didn’t fit the profile," the patient said.
Instead, the hospital performed a lung biopsy on him, said he had
pulmonary fibrosis and sent him home breathing oxygen from a tank, he said.
Then his pulmonary doctor left for a vacation and told him they would
discuss the biopsy when he returned in 10 days.
But three days later, the patient’s wife, worried that her husband
was about to die, called the hospital and asked for more immediate help. A general
practitioner called the lab where the biopsy was being examined and discovered what the
pulmonary doctor probably would not have revealed for another week: the patient had AIDS.
Within hours, he was airlifted to a hospital that specializes in the disease.
Six months later, he said, the same delays in diagnosing the disease
happened to another patient with the same doctors.
Today, the patient looks healthy. He frequently travels 300 miles for
ongoing treatment, he said, and has organized a small support group of AIDS patients in
rural Utah that carpools and asserts their needs as a group.
About half a dozen people participate in the group, he said. One member is
a hemophiliac who was infected during open-heart surgery, he said, and the one gay male
who was in the group recently died.
"We made it known that we wanted treatment," he said.
"I’m not saying things are not getting better, they have."
Doctor Kristen Ries, a professor of medicine at the University of Utah,
said that while attitudes in the rural west about AIDS have gotten better,
"unfortunately, all too common is the story you just heard."
And the number infected with AIDS and HIV has increased since she began
treating her first 50 patients in 1985. In 1994, she said, she treated 500 patients.
Still, Ries said that rural care providers are hard pressed to keep up
with the rapid onslaught of information about AIDS. Profiling, for example, is an outdated
means of identifying certain groups as being at risk for contracting the disease. In the
case of the rural Utah patient, doctors’ reliance on profiling nearly cost him his
life when they assumed a married man was not at risk.
But Dr. Dawn Glore, an outspoken physician from Sacramento, said that
ignorance of the disease probably isn’t the issue, and definitely isn’t an
excuse.
"I don’t think you can say what happened to this gentleman is a
lack of education," she said. "It’s a prejudice."
Ries said that the patient’s doctor probably didn’t give the
test because he "thought in his mind that if he did this test he was making some sort
of statement about the patient. And in his mind, that statement was not acceptable."
Providing healthcare in a rural area is difficult, she admitted, but that
doesn’t mean the quality of care has to suffer.
"In a rural area," she said, "you don’t have to be an
expert on anything, but on speaking terms with everything."
For his part, the anonymous patient said he and his group has benefited
from being open about his disease.
"The more open I’ve been," he said, "the less the
gossipmongers have had to say."
