In honor of National Youth HIV/AIDS Awareness Day on April 10th, NACCHO is highlighting organizations that help address HIV and health inequities among youth. Keep reading to learn about St. Jude, an organization supporting LGBTQ+ youth located in Memphis, TN.
1. What is your organization’s mission?
The mission of St. Jude Children’s Research Hospital is to advance cures for pediatric catastrophic diseases through research and treatment.
2. How does your organization support youth living with or impacted by HIV/AIDS?
St. Jude supports youth living with or impacted by HIV/AIDS in a multitude of ways. In 1987, Danny Thomas recognized HIV/AIDS as a catastrophic disease affecting children and, with Dr. Walter Hughes, formally announced the creation of the St. Jude HIV program. The program accepts children and youth diagnosed with HIV through age 21 and provides comprehensive, multidisciplinary care at no charge to the patient through age 24 at which point they are transitioned to the care of an adult care provider. Each patient’s care team includes clinicians, nurses, social workers, a pharmacist, a psychiatrist, a psychologist, a chaplain, and a child life specialist. In addition to linking youth to care, St. Jude also provides youth, who are interested and eligible, access to some of the latest research that pursues advances in HIV prevention and treatment. Through such efforts, Memphis/Shelby County youth have participated in research studies, such as the one looking at a once every two-month injection for HIV prevention which led to the United States Food and Drug Administration (FDA) approval of the first long-acting medication for HIV prevention. The St. Jude HIV Prevention and Treatment Program has a Youth Community Advisory Board (YCAB) which provides feedback to researchers, such as the National Institute of Health (NIH) funded Adolescent Trials Network (ATN) regarding clinical trials and clinical trial recruitment.
3. Why is National Youth HIV & AIDS Awareness Day (NYHAAD) important to you?
Young people represent the future and are often misunderstood or not recognized for the special attention they deserve. For example, they can inadvertently become “orphans of the healthcare systems” – transitioned out from pediatric care and lost in the vastness of adult care. NYHAAD is a day to pause and recognize youth and their needs, including everything that can be done to promote sexual health and prevent sexually transmitted infections including HIV. It is a day to pledge to look out for opportunities to advocate for youth at every level, including policy and practice. Ending the HIV epidemic is not possible without recognizing and addressing the needs of youth and including them in the planning.
4. What can local health departments learn from your work about supporting youth impacted by HIV/AIDS? What resources do you want to share with local health department HIV programs?
Since its inception more than 37 years ago, the St. Jude Children’s Research Hospital’s HIV Prevention and Treatment program, noted as a Tennessee Center of Excellence for HIV care, has delivered state of the art comprehensive medical and behavioral health care to children and youth living with HIV (LWHIV) at no charge to the parent, participant, or their family. In parallel to providing the best standard of care, the St. Jude HIV Program has provided children and youth access to some of the latest advances in HIV prevention and treatment that have been researched over me. As a result, St. Jude HIV program parents and participants have contributed to drug development of many drugs and treatments that over me have become the standard of care. All of this would not have been possible without the collaboration and support of countless community-based partners including Friends for All, Partnership to End AIDS Status, Methodist Le Bonheur Community Outreach, Hope House, OUTMemphis, the local health department, and many others. For more than a decade, a close relationship with the Memphis Shelby County Health Department led to a one of its kind linkage to care program for youth that was featured nationally as a best practice model. There are two important lessons learned for everyone, including local health departments:
- The importance of seamlessly integrating clinical care with research. Do not have assumptions of what standard of care or research options you think youth will want or not. Present all available options to youth and they will decide. A partnership of trust and mutual respect between the state and local health departments, community partners and centers like ours who have the shared goal of ending the HIV epidemic is crucial. Together we are all stronger. Alone, we cannot achieve the EHE goals.
- As far as resources for youth living with or at risk of HIV to share with health departments around the country, we point to the NIH funded Adolescent Medicine Trials Network for HIV Interventions (ATN). ATN Consortiums, such as the St. Jude Memphis Site Consortium are located around the United States and an example of adolescents, communities, and researchers working together to increase and enrich the health and well-being of youth and young adults. Collaborating with the ATN where feasible would be mutually beneficial and bidirectional learning for the local health departments and ATN consortiums.
5. What should local health departments keep in mind when engaging youth and young adults?
All who work with youth should continue to be mindful of meeting youth where they are, and that includes virtually in social media spaces and in person at strategic venues including schools and local community centers. Youth are engaged on apps such as TikTok, Snapchat, Instagram and constantly evolving other social media and dating platforms. They are continuously active in the virtual world and most obtain news/media and educational information from social media or searching on popular search engines online (Google). Mainstreaming sexual health information in these virtual platforms for youth will remain critical. In parallel, mainstreaming sexual health education and access to applicable resources for testing, prevention, and treatment, while more challenging in some parts of our country than others, remains an important goal for all. Youth are beginning to experiment with their sexuality as young as 13 years old (8th grade middle school) and have minimum knowledge of sexual health. Initiating positive conversations about sex, sexuality, gender identity, etc. in school settings between the ages of 13 to 18 years old could help bend the curve of new HIV infections amongst youth news/media and educational information from social media or searching on popular search engines online (Google). Mainstreaming sexual health information in these virtual platforms for youth will remain critical.
