IU School of Nursing Scientist Committed to Addressing HIV Epidemic Among Adolescents and Young Adults

By Rachel Leshinsky

The Centers for Disease Control and Prevention (CDC) states that African Americans account for 45 percent of HIV diagnoses, even though they only represent 12 percent of the U.S. population, and Latinos accounted for 24 percent of HIV diagnoses, but only represent about 18 percent of the U.S. population. Because they are the most affected racial group, African Americans have a lifetime infection risk of 1 in 20 for men (1 in 132 for white men) and 1 in 48 for women (1 in 880 white women). 

Furthermore, 1 in 2 black men who have sex with men (MSM) will be diagnosed in their lifetimes. MSM face the highest risk of an HIV diagnosis in their twenties, which means prevention efforts must begin in adolescence. However, MSM are routinely excluded from HIV prevention research studies because of the ethical complexities of involving them in research. The HIV prevention field is rapidly advancing, but the most affected populations are unable to gain access to treatments through research studies. For example, pre-exposure prophylaxis (PrEP), a daily oral medication used to treat HIV, is actually 92 percent effective at preventing HIV infection if taken correctly.

Amy Knopf, PHD, MPH, RN, IU School of Nursing assistant professor, is committed to resolving disparities among marginalized populations affected by sexually transmitted diseases, especially among adolescents.

“I have always been interested in this topic,” said Knopf. “Studying infectious diseases such as HIV reflects social processes and the ways in which certain populations are marginalized in our society.”

In the interest of sharing lessons across contexts, Knopf recently presented at the United States Agency for International Development (USAID) Microbicide Research, Development and Introduction Program, Cooperating Agencies Meeting in Washington, D.C. She discussed her work on several projects with the U.S. Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN), including her newest research project that will focus on innovative approaches for minor consent and reenrollment in biomedical HIV prevention trials.

“There is a well-documented reluctance to include adolescents in these types of studies,” said Knopf. “This ultimately creates delays in their ability to access new, effective prevention tools and I believe that needs to change in order to have an impact.”

In addition to researchers’ reluctance to include adolescents in research, previous studies have indicated that young people chose not to participate because they had to gain parental permission, which could involve disclosing sexual activity and sexual orientation.

According to the Global Burden of Disease Child and  Adolescent Health Collaboration, HIV is the leading cause of death globally for adolescents ages 10-14 and one of the leading causes for young adults ages 15-19. U.S. AIDSVu, a project spearheaded by Emory University’s Rollins School of Public Health, found that 24 percent of new cases in the U.S. in 2015 were among individuals aged 13-24, a 2 percent increase from 2014. The same study found that an estimated 50 percent of that population was unaware they were infected.

With a $1.1 million grant from the Eunice Kennedy Shriver National Institute for Child Health and Human Development and the ATN, Knopf and her team will work to find acceptable pathways to consent adolescents for enrollments in biomedical HIV prevention. Recruitment will begin this fall and will focus on including high-risk teens and parents of teens in parts of the country with high HIV incidence.

The team will conduct simulated consent procedures for biomedical prevention trials with adolescents ages 14-17 and examine how age, gender, stage of drug development and type of consent (parental, self, third-party) impact willingness to participate. They will also enroll parents of other 14-17-year-olds and present a series of consent vignettes then ask them to rate the acceptability of each consent procedure for the same trials presented to the adolescents.

“The lessons we learn from this study will have implications for future research projects and the results will hopefully be useful to colleagues working on drug trials in Sub-Saharan Africa. Intensified prevention efforts are needed, given the adolescent population has doubled since the HIV epidemic began there,” said Knopf. “With an expanding population of adolescents and high rates of HIV among young women, we risk losing progress made in the global fight against AIDS. There are gaps to be filled.”