Our efforts to end the HIV epidemic must prioritize people living with HIV/AIDS (PLHIV/AIDS), particularly people who have fallen out of care and off their meds. Four hundred thousand Americans living with HIV have fallen out of care. Meds keep PLHIV/AIDS alive. We prioritize people who have fallen out of care because of the benefits to the individual and their community. Plans to end the HIV epidemic (EHE) must focus on retention in care. As we have learned, it is not a question of linkage, it is retention that is the challenge.
EHE plans need medical case management or patient navigators to both support people in care and to work with those who have fallen out of care. Hires in the past had challenges because these positions were usually classified as entry level positions. The people hired had little understanding about what it means to live with HIV. To end the epidemic, we need to honor the experience and hire people who live with HIV and AIDS day to day. Their lived experience should mandate a professional salary because this is a specialized skill and not an entry level position. Hire people who have a personal understanding of what it means to successfully live with HIV. This not only benefits the outreach programs it also helps the employee. Studies have shown that too many long-term survivors live with isolation that can lead to depression. Having a job is an important component to self-worth and value. Asking someone’s HIV status when hiring is illegal; however, allowing people to self-disclose is perfectly acceptable.
Not only do we need to hire people living with HIV/AIDS, we also need to make sure the new hires reflect the diversity of the local epidemic in terms of race, gender, sexual orientation and people with trans experience. Peer to peer outreach has always been shown to be the most effective way to touch hard to reach communities. From NMAC’s perspective, who gets hired will make the difference between ending the epidemic versus staying the course with 40,000 new cases every year.
Building the infrastructure needed to end the HIV epidemic requires thousands of new hires to retain the 400,000 people living with HIV who have fallen out of care and the 900,000 more people needed on PrEP. This is the reason NMAC and many national partners have advocated for the hundreds of millions in new funding. The funding will only matter if jurisdictions, health departments, community based organizations, and health centers hire people who are successfully living with HIV and help them to translate that experience to their peers.
EHE plans should be the largest new employment program for PLHIV/AIDS. This is not about being politically correct; it is about creating programs that work. Trust is a key component to keeping people in care. You are more likely to trust people who have similar values and life experiences. Living with HIV is a very unique experience. It’s much easier to work with clients when you speak from personal experience when addressing the challenges of talking to your doctor, disclosing to your family and friends, taking meds on a daily basis, dating, sex, children, employment, and all the issues that impact daily life with HIV.
This doesn’t mean that people living with HIV should be limited to HIV care jobs. Any job with a living wage, career growth opportunity, and professional development opportunities should be open to and held by PLHIV/AIDS. But this particular area seems like a natural and logical fit for many PLHIV/AIDS.
Over the next weeks, NMAC is going to put together a sign-on letter to HHS, CDC, and HRSA asking them to review, evaluate, and update the HIV service mix to meet the needs of an aging population of PLHIV/AIDS. NMAC will bring 15 people over 50 living with HIV to AIDS Watch to both train and to make sure this important voice is at the table. While in Washington, NMAC will seek a meeting with Harold Phillips, Dr. Laura Cheever, and Dr. Jono Mermin to talk about all the issues, challenges, and opportunities that ending the epidemic provides for people living with HIV/AIDS. The administration may not fully understand the central role at PLHIV/AIDS play in ending the epidemic, so it is our movement’s responsibility to both educate and nudge them.
Yours in the struggle,
Paul Kawata
One of 33 founders of the National Association of People with AIDS
