Finding: Some Texans with AIDS fear clinical trials

Fresh out of college with a nursing degree, Jennifer Gray wanted to make a difference in the world, so she headed to Africa. Beginning in 1978, she would spend 20 months in villages dotting the Cameroon countryside, working out of small clinic buildings built by the villagers—dirt floors and thatched roofs, not much protection from the elements, but a place people could go for vaccinations and basic medical care.

“I probably saw HIV patients,” said Dr. Gray, now an assistant professor in The University of Texas at Arlington School of Nursing. “But we didn’t know what the virus was.”

The earliest case of HIV infection, the virus that causes AIDS, was found in 1959 in a plasma sample taken from an adult male living in what is now the Democratic Republic of Congo. The first case of AIDS was not diagnosed in the United States until 1981. By 2003, nearly 406,000 people in the United States were living with the disease, including more than 30,000 in Texas.

Gray’s interest in AIDS and HIV started while studying for her doctorate at Texas Woman’s University in the late 1990s. She did her dissertation on women with HIV and how they handled the stress of the illness.

In 2003, her research focus shifted to the prevalence of HIV/AIDS among minority populations in Texas and the lack of clinical trials in small communities across the state.Most common HIV/AIDS drugs lose effectiveness after about five years, and clinical trials are a way for patients to receive new treatment options, including the latest medications.

Clinical trials have traditionally been unavailable in many areas because of limited resources. However, in rural communities in East Texas and along the Texas-Mexico border, the situation is much worse. Gray’s groundbreaking studies uncovered important psychological barriers to detecting and treating the disease in these areas.

“We found a lot of fear and mistrust among the AIDS populations in the two regions, especially among minorities,” said Gray, who conducted nine focus groups in Harlingen and Longview in conjunction with the Texas/Oklahoma AIDS Education and Training Center (AETC). Focus group participants included 34 men and 24 women with a racial mix of 24 Hispanics, 20 whites and 14 African Americans.

Participants expressed fear over the discovery that they have the disease.

“I was diagnosed (with HIV) and kept it to myself,” one participant said. “I was scared to lose my job and friends.”

Another said, “They (my family) don’t want you around them. You gotta use paper (plates and utensils). It could be your momma, your whole family. (They) just want you to go away.”

Participants also harbored mistrust for the health care community and the U.S. government. “(AIDS) was (created by the U.S. government as a) genocide against blacks and Hispanics,” said a participant. Said another: “The cure (for AIDS) is only for people who can afford it.”

The focus group concerns included financial compensation in the case of side effects and the fear of not receiving medications during the clinical trials, perhaps stemming from studies such as the Tuskegee Syphilis Study from 1932 to 1972.

“The researchers didn’t give treatment in the study,” Gray said. “They waited to see how long it would take for the syphilis patients to die.”

Gray’s study revealed that more education is needed in rural areas to combat the stigmas associated with HIV/AIDS and mistrust of the health care community. The health care profession must set realistic expectations for clinical trials—especially regarding side effects and use of placebos—among HIV/AIDS patients.

In response to the findings, AETC has created a training program for health care workers, and the center is facilitating clinical trials through large pharmaceutical companies. The companies are testing new drug protocols used in conjunction with a patient’s existing HIV/AIDS medications.

— Becky Purvis