A Call to Action: Meeting the Needs of Long-term Survivors


HIV prevention and care is more than “Getting to Zero” (new infections) and achieving viral suppression. HIV prevention and care is about creating health equity for all, including Long-term Survivors (LTS). “By health equity, we mean everyone has the opportunity to attain their highest level of health. Inequities are created when barriers prevent individuals and communities from accessing these conditions and reaching their full potential.” (American Public Health Association)

For the purpose of this post, LTS is defined as those of us living with HIV who tested positive for the virus before the advent of highly active antiretroviral therapy (HAART) in 1996. We have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many aspects of long-term HIV survival are not the same as those faced by others more recently diagnosed with the virus. Many LTS, myself included, have served as our own case manager since embarking upon a journey that continues to bring us into new and uncharted territories.

At a recent meeting of my local Long-term Survivors Support Group (LTSSG), discussion ensued about an increasing need by some members for first-time and/or acute case management and supportive services. Members shared some of their emerging challenges of long-term HIV survival and aging with HIV, which included navigating increased healthcare services, fatigue and barriers to accessing case management. One member had problems getting case management because of being deemed “not vulnerable” at a local AIDS Service Organization (ASO). “Not vulnerable” was defined as being engaged in care, having achieved viral suppression, and in stable housing.

Another concern raised by group members was the current level of knowledge, expertise, and ongoing professional development, if any, that case managers and other providers had in the areas of long-term survivors, our emerging needs and aging across the lifespan, with an emphasis on gerontology. With advances in HIV treatment, more individuals have grown older with the disease. Do ASOs, state health departments and city health agencies really know the needs of this population in our community if they never see or hear from us?

As we move forward, we LTS need to continue to engage one another in discussions that acknowledge each other as pioneers and explorers of not only surviving with HIV/AIDS but also thriving. We need to bring our voices to the priorities and implementation of local, state and federal initiatives. Locally, that includes the Massachusetts State Integrated HIV Prevention and Care Plan, 2017-2021, and the Boston EMA Ryan White Planning Council’s Comprehensive Care Plan, 2016-2019. At a minimum, these strategic plans should include early on a consumer study on the unmet needs of long-term HIV survivors. Today with so much emphasis on Getting-To-Zero (new infections) and achieving viral suppression, many of us long-term survivors feel invisible, unheard and forgotten. Our needs cannot be pushed aside for the next three to four years!

HIV Long-Term Survivors Awareness Day is held annually on June 5th on the anniversary of the first published report of what came to be known as AIDS. 2016 is a big year in the history of HIV/AIDS in the US. Not only does it mark 35 years since the first report of AIDS, it also marks the 20th anniversary of Highly Active Antiretroviral Therapy (HAART), turning what was once a death sentence in to a “chronic manageable illness”. To get involved or learn more; visit http://hltsad.org.

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