Download Still life or death: Promising clinical trials offer hope to HIV/AIDS

Still life or death: Promising clinical trials offer hope to HIV/AIDS patients
By Joseph Pena
Before HIV/AIDS treatment was available from primary care physicians, people were
banging down the doors to clinical research centers for help, said Jack Degnan., Director
of Outreach etc.. ..
Now, Degnan, director of outreach, patient recruitment and education at UCSD’s
AntiViral Research Center (AVRC), fears most people aren’t interested in participating in
research studies.
“Today, there are effective treatments that you can get from your doctors, but there are
still problems with these new drugs,”(This sentence is not clear) said Degnan. “It’s harder
to get people interested in clinical trials because it’s not as life or death to most people
anymore.” This would be good as the second sentence.
The AVRC offers Clinical trials designed to monitor the safety and effectiveness of
HIV medications are offered at the AVRC. The center tests FDA approved drugs, alone
or in combinations, to evaluate the drugs’ effects on HIV patients.
Participants aren’t required to have insurance or pay for the treatment. In addition,
they have access to language interpreters and after hours, on-call medical staff. Monetary
compensation is offered for some of the trials but the opportunity to test promising new
drugs used to combat HIV/AIDS draws many.
Researchers at the AVRC work with primary care physicians to prescribe drugs for
patients and better monitor the patient’s health.
“For some, in addition to the primary care they’re receiving, it’s another set of eyes
looking after you,” said Degnan.
Currently the AVRC offers almost 20 clinical trials and is involved in 15 other
ongoing studies.
The open studies range from involve clinical trials on treatment-experienced to
treatment-naïve adults (will this be clear to the reader?) and also examine complications
in early and late phases of HIV infection.
The center provides transportation and childcare for adults interested in participating
in the studies.
According to the results from focus groups, the AVRC has had difficulty recruiting
people of color to participate in clinical trials because of mistrust of research, mistrust of
the medical establishment, cultural beliefs about medicine, lack of access to healthcare in
general, and in some situations, real or perceived medical provider prejudices. Degnan
attributed these findings to focus groups conducted by the AVRC.
“It is important that all populations be represented in HIV research,” said Degnan, via
email. “If we only do research on white males, we will only be able to say how these
medications work in white males.”
In the year ending June 2002, 96 percent of the patients enrolled in clinical studies at
the AVRC were male and 72 percent were white. Eighteen percent of participants were
Hispanic and nine percent were African American.
The UCSD Mother, Child, & Adolescent HIV Program is a part of the worldwide
Pediatric AIDS Clinical Trial Group (PACTG) and offers similar services to pregnant
women infected with HIV/AIDS.
The program also prescribes controlled clinical trials of new drugs and combinations
of drugs.
According to the PACTG, the program’s primary goal is decreasing mother-to-infant
transmission of HIV to less than 2 percent. The program also hopes to achieve a 90
percent 10-year survival for children infected with HIV during birth and develop
strategies for early treatment of newly infected infants and adolescents.
“The whole reason we are under the pediatric trial group is to protect the baby,” said
Mary Caffery, who has worked in HIV clinical trials for 13 years.
Caffery said that researchers inform patients how much (and how little) they know
about new drugs before beginning trials.
“Generally there aren’t a lot of adverse effects and toxicities,” said Caffery. “But we
do let people know how much we don’t know.”
Regardless, there have been no significant birth defects as a result of treatment, said
Caffery, knocking on wood.
The Mother Child & Adolescent HIV Program has a higher number of minorities
participating in trials, with only seven percent of participants being white. Fifty percent
of participants are Hispanic/Latino and 22 percent are African American.
The PACTG has branched out to provide trials and healthcare in South Africa, Brazil
and Thailand, to name a few countries. Caffery is excited that the work being done
benefits women and children worldwide.