Throughout the 25 year history of the Ryan White HIV/AIDS Program (RWHAP), there has been a concerted effort to focus attention and resources on youth affected by HIV. In 1993, the Pediatric AIDS Service Demonstration Grants, administered by the Health Resources and Services Administration (HRSA) for HIV-positive children and their families, were incorporated into RWHAP, specifically the Part D program for women, infants, children and youth. In addition, the Special Projects of National Significance (SPNS) Program has funded several demonstration projects focused on adolescent care as well as engagement and retention in care initiatives for high-risk youth populations.
HRSA’s HIV/AIDS Bureau (HAB) partnered with the Office of the Assistant Secretary for Planning and Evaluation (ASPE) this summer to hold a technical expert consultation on youth and HIV. The purpose was to identify strategies aimed at improving retention in care, medication adherence, and viral suppression for youth aged 13–24 living with HIV who receive RWHAP-funded services.
During the technical expert panel, I felt honored to hear from young people about their lives, experiences, and ideas. In 1990, I was diagnosed with HIV when I was 22 years old. The HIV experiences of earlier generations are very different. In the early 1990s, young people with HIV were dying of AIDS. Today, young people have access to high-quality care and medications that could ensure they live close to a normal life span if they remain adherent. This generation of young people has access to information and support via social media and the Internet in ways I could not have imagined. Despite these differences, many issues raised during the consultation remained the same from when I was a youth advocate at a small nonprofit, helping young people like me living with HIV.
Major Themes from the Technical Expert Panel
During the day-long dialogue with RWHAP grantees, clinic directors, providers, and youth living with HIV, several themes emerged.
“In the first few minutes, you know if you’re gonna like it or not.” – Youth panelist
Youth participation is vital. Nearly half of the 12-member technical evaluation panel was young people either living with HIV or working to address HIV in their communities. Their voices and input raised key issues that only they could have addressed. It is critical to include their meaningful involvement in the development and implementation of initiatives and services intended to reach them.
“I’m a person, not a patient.” – Youth panelist
Recognize provider goals and young people’s priorities may differ. Several panel conversations highlighted there can be dissonance between our goals as providers and leaders of programs and the priorities of the youth we are seeking to serve. For example, one youth participant shared that he did not like going to his doctor because the only thing the doctor seemed to care about was if he was taking his medications and was virally suppressed. What was important to this young man was having a provider who authentically cared about him as a whole person, not as merely a carrier of a virus that had to be controlled. The value of having a connection or bond with a young person is supported by the American Psychological Association in their paper [ PDF 796 KB] on working with adolescents.
Youth and Young Adults and the Ryan White HIV/AIDS Program
According to the most recent data, nearly 45% of youth aged 13–24 with HIV in the U.S. do not know they are infected [PDF 6411 KB]. By comparison, three-quarters or more of adults aged 25 and over are aware of their HIV status. Among youth aged 18–24 who are aware of their infection, only 41% are engaged in care and 34% have been prescribed antiretroviral therapy (ART). As a result, viral suppression was only achieved in 26% of youth aged 18–24 years (CDC 2015).
The RWHAP provides HIV primary medical care, treatment, and supportive services to approximately 2 out 3 of the people who are engaged in HIV medical care in the U.S. Approximately 5% (27,000) of all RWHAP clients are aged 19–24 and 1% (5,000) is aged 13–18 years—with most being young people of color and young men who have sex with men (MSM) (See Figure 1).
Mirroring national trends, outcomes for youth receiving RWHAP services are not as good when compared to adults receiving RWHAP services. For example, viral suppression is lower for youth aged 13–24 (60%) than for people receiving RWHAP services overall (79%) (See Figure 2).
For more information about youth and young adults and RWHAP, read the latest report [PDF 2,694 KB] released in September 2015.