Decisions to stop (or never start) drug treatments for HIV infection: A pilot study of long-term nonprogressors (LTNPs)

"Anomalies". That is how mainstream science and health care view persons who have tested positive for HIV infection, have refused to submit to mainstream treatments, yet have survived for a decade or longer without developing AIDS.

If LTNPs - also known as long-term survivors, long-term healthy seropositives, elite controllers, or elite suppressors - have captured the attention of geneticists, virologists and immunologists, they have, nonetheless, gone unnoticed by clinicians, policy makers, and health educators. Nonprogressors remain, for all practical purposes, "anomalies"; mysterious cases for which science cannot easily account.

Specifically, very little is known about the lived experiences of HIV+ persons who refuse mainstream anti-retroviral therapies and remain AIDS-free for many years. Some of the questions we don't have good answers for, include:

• What shapes the decision not to start, or discontinue the highly active anti-retroviral therapies (HAART)?
• What shapes the decisions to stand against a dominant culture of pharmacological preventive therapy for HIV infection? What does it take to go against the mainstream? How much stress does taking a stance against drug treatments, involve?
• Do LTNPs who refuse HAART therapy believe the drug regimen could harm, instead of improve their health?
• Do people from certain ethnic, or cultural groups, have specific reasons (unique to their group or their culture) for not starting or stopping HIV drug treatments?
• Do men and women decide never to start or to stop drug treatments, for different reasons?

To begin answering these questions is the main objective of this study. And in order to answer these questions, we need to listen to the stories of people who have experienced exactly what we're talking about, here: no drug treatment for HIV infection.

The Principal Investigator in this study is Dr. Pat Goodson. She is a health educator, and a professor in the Division of Health Education (Department of Health & Kinesiology). She has been at Texas A&M University for 11 years. One of her areas of research is the sexual health of adults and adolescents.

Pat is seeking participants for this study. If you, or someone you know, might be interested in participating, and would like to be interviewed, please check to see if you meet the criteria for participating in the study. We can only interview people who:

• were diagnosed HIV positive at least 8 years ago
• have not been diagnosed with AIDS (ever)
• are not taking medication for HIV at the moment
• are 18 years old or older

If interested, please contact Pat Goodson (or her research assistant) to set up an interview by PHONE or SKYPE:

Pat Goodson at (979) 845-1756 or nomeds@hlkn.tamu.edu.

Check our more about our research on YouTube.