Each year, World AIDS Day is observed on December 1st and provides an opportunity for people to unite around the goal of ending the HIV epidemic, show support for people living with HIV, and remember those we have lost to the disease. Although great progress has been made, the fight is not over. AIDS-related mortality decreased by 69% since 2004, however, there were 39 million people globally living with HIV and 1.5 million new infections in 2022. Median HIV prevalence was higher among sex workers, men who have sex with men, transgender persons, IV drug users, and prisoners (1). These key populations continue to need support because most new HIV infections and deaths occur where certain high-risk groups are unaware, underserved, or neglected (2).
For almost 30 years, Options for Community Living, Inc. (Options) has been a significant force in the effort to end the HIV epidemic on Long Island. Founded in 1982, Options has been providing housing and support services for adults living with mental illness and operated an emergency shelter program for homeless families in Suffolk County (1990-2013.) In the early 1990’s as HIV+ cases on Long Island grew in number, Options recognized the profound need to serve this population. In 1994, Options began to provide intensive Medicaid case management services for people living with HIV and AIDS (PLWHA’s.) We connected people to medical care and benefits and provided additional resources, information, and support. Soon after we began to develop supportive housing as homelessness among this population increased. Both programs expanded to become the largest of their kind on Long Island and still operate today. Other services like treatment adherence, medical and supportive case management, health education, and housing-related financial assistance including rent subsidies provide additional support and have helped thousands of PLWHA’s live healthier and more independent lives.
At the inception of Options Medicaid case management program in 1994, AIDS was the leading cause of death for all Americans ages 25-44 years old (3). As a new Program Coordinator in my early 30’s, I was grateful for the opportunity yet extremely nervous about being responsible for program development. We were seeking referrals and offering to provide help to a population that had not been targeted before and was less familiar with Options. The internet was not yet widely utilized, so we used our initiative and research to document the community’s need for grants through library visits, phone calls, and CDC epidemiology searches. Outreach also required a boots-on-the-ground approach with in-person presentations, new community relationships, and frequent newspaper ads. Once several clients were enrolled and their needs assessed we realized even more challenges lay ahead.
Options employees hired for this new program were caring and compassionate but at times were overwhelmed by the emotional toll of the work. They were often the only support for clients who were visibly sick and/or homeless after being evicted by their families once they disclosed their HIV-positive status. Client risk factors were assessed, including histories of substance use or unprotected sex, and staff were responsible for not only having difficult conversations about safer practices but also helping prioritize needs and goals. Clients faced stigma and fear of transmission in the community but also needed education and advocacy to survive. Others lost relationships or jobs, and many were dying. It was a time of true crisis and we all learned and often cried together. To this day, I continue to feel very proud of everyone involved with the program, then and now.
Thankfully, by 1997, AIDS-related deaths in the U.S. declined by 47 percent and highly active antiretroviral therapy became the standard of HIV care (3). This was a significant medical advance, but people still needed housing, support, and advocacy. Options responded introducing additional Ryan White funded programing and expanded housing opportunities where we saw families find improved health, stability, and hope for the future. The impact of safe, affordable supportive housing can never be overstated. While some people stay in our housing for a few years and move on with a housing voucher or decide to live with family, many stay long-term and set roots in the community. In one situation, we admitted a single mom and her six-month-old son. She had a history of addiction but had come into recovery and was seeking housing. They were living in a single room for over a year when they were accepted into Options’ housing. While in housing and supported by a case manager, she has maintained her health and sobriety. She is involved in her community and her son, now 21, is finishing college while also working. She reunited with her two older children who visit regularly, and she proudly hosts holiday gatherings for her family and friends.
President Biden’s National HIV/AIDS Strategy sets bold targets for ending the HIV epidemic in the U.S. by 2030, including a 75% reduction in new HIV infections by 2025. The strategy focuses on preventing new HIV Infections, improving HIV-related health outcomes of people with HIV, reducing HIV-related disparities and health inequities, and better-coordinating efforts to address the HIV epidemic among all partners and stakeholders. Like Options, programs need to address unmet needs with HIV education and testing, access to affordable health care, and prevention resources and strategies like condom distribution. HIV is not “over” simply because of medical advances. To ensure we connect to target populations, outreach to high-risk groups requires better communication to overcome barriers and improve health literacy. Empathetic employees and strong partnerships for client care are key. At Options, “peer” workers with lived experience inspire, empower, and support clients in their recovery. Our programs promote prevention and provide education about pre-exposure prophylaxis. Partnerships with local providers including needle exchange help those at high risk for HIV. This model can be duplicated and expanded to reach more people at risk.
Today, through long and short-term housing programs, Options houses over 100 PLWHA’s and their family members. We help more than 400 Long Islanders living with HIV and AIDS access medical care and benefits through case management services and vital health education and resources. Furthermore, Options is partnered with Northwell Health and several other providers in Nassau County to ensure that HIV prevention services meet community needs.
On the front line of the HIV Epidemic since 1994, Options for Community Living implemented a safety net for those who needed it at a time when many were still afraid. These programs continue to impact our local and nationwide efforts to “end the epidemic” especially in high-risk groups. If we can ensure that high-risk populations have fair access to testing and treatment without judgment, and continue to focus efforts on prevention through education and communication, we will end AIDS. I have faith that we will get there, and I look forward to that day knowing we did our very best to help vulnerable Long Islanders impacted by this terrible disease.
Allison Covino is a program director at Options for Community Living, Inc. overseeing all HIV and AIDS-related programs and care management programs for adults and children. She can be reached at email@example.com. To learn more about Options for Community Living, Inc., visit https://optionscl.org/ or call 631.361.9020.