 Alumni
Interviews:
Marta Van Beek, M.D.
" This is pure speculation, but I think someone
in the U.S. with the same rash might say, ‘I am incapacitated
by this,' whereas Ugandans may rate the problem only slightly bothersome...When
you don't have electricity and have to carry your water, an itchy
rash may be just another thing you have to
deal with."
If there is a bright spot in the African HIV epidemic, it may
be Uganda. The Sub-Saharan nation appears to be the first African
state where infections have leveled off or declined, due in part
to an extensive prevention campaign. It also has long been a site
for research like the project recently took part.
Now a UI assistant professor of epidemiology, VanBeek first traveled
to Africa as a medical student. "I had done a clinical rotation
in Zimbabwe through the Barry Freeman Fellowship, so it was much
less of a culture shock," she said, describing her return
to the continent. Her focus on this trip: a troublesome and largely
unstudied rash among people with HIV.
She and a colleague from the University of California-San Francisco
pursued the project in conjunction with a Centers for Disease Control
study on antiretroviral therapy. The rash -- dubbed papular
pruritic eruption -- tends to appear where such therapies
are rare, and thus is fairly uncommon in the United States.
"
CDC investigators were realizing that this was a big problem, mainly
because the rash is almost unbearable, but also because it is stigmatizing," VanBeek
explained. Prevailing theories suggested it might be a mix of conditions
exacerbated by HIV, or the product of self-excoriation. "There
had never really been a big enough group to study," VanBeek
said.
She and colleagues enrolled 120 patients with CDC assistance,
administering questionnaires to assess exposures and how the rash
affected quality
of life. They examined participants, performed skin biopsies, and
took HIV load and CD4 counts.
"
We hope to come up with some common denominator," Van Beek
said, noting that the data is still under study. "Going there,
I thought it was probably some combination of diagnoses, but it
is definitely an entity in and of itself."
International research comes with challenges and issues. VanBeek's
study not only had to pass muster with the institutional review
board at UCSF, which funded the project, but also needed approval
from a Ugandan review board. Though both boards signed off on the
proposal, questions regarding consent remain on researchers' minds.
"
You can translate the consent form, but do participants fully understand
what it means?" VanBeek said. She also noted that providing
study subjects with transportation and a meal is relatively generous
compensation for impoverished people. "Considering that they
make $5 a month and a ride to town is 50 cents, a meal 15 cents,
are they really providing informed consent? That's always
a bit of a concern."
There is also the matter of using research tools validated using
one population to assess problems among another. "What is
very bothersome in Uganda may be different from what is moderately
or very bothersome in the United States," VanBeek said, discussing
the quality-of-life questionnaire she administered.
"
This is pure speculation, but I think someone in the U.S. with
the same rash might say, ‘I am incapacitated by this,' whereas
Ugandans may rate the problem only slightly bothersome," she
added. "When you don't have electricity and have to
carry your water, an itchy rash may be just another thing you have
to deal with."
VanBeek's experiences in Africa show how dramatically health
care practices and policy vary from nation to nation, town to town
and year from year, particularly when it comes to HIV. "In
Zimbabwe, it was culturally and politically unacceptable to make
an HIV diagnosis before 1990," she said. "Uganda was
one of the earliest places where HIV was recognized, and is probably
going to be one of the first African countries that can successfully
distribute antiretrovirals."
Whether at home or overseas, VanBeek remains interested in HIV
medicine and research, something she hadn't pursued before
this study. She also hopes to return to Africa should her findings
merit further work. "Part of the reason I got involved is
that I love Africa," she said. "It is the most beautiful
place I've been by far."
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