2:10 - 2:30 pmSunday, September 18
Plenary Hall
Long term HIV survivors: sharing hard truths
Plenary Hall
Long term HIV survivors: sharing hard truths
Edu. Development Ctr
Approximately 25% of the 1.2 million US citizens living with HIV are 55 and older (CDC, 2011); many of these are long-term survivors, commonly defined as having lived for 25 years or more since their original... Read more


Approximately 25% of the 1.2 million US citizens living with HIV are 55 and older (CDC, 2011); many of these are long-term survivors, commonly defined as having lived for 25 years or more since their original diagnoses. These men and women lived through decades witnessing their contemporaries dying in large numbers while the medical and political establishment lagged in their response to the enormity of the epidemic. Now, as they age, they face a constellation of physical and mental health issues related both to the trauma of the epidemic and to the cumulative side effects of decades of antiretroviral medications: e.g., organ damage, neuropathy, depression, anxiety, and social isolation. While the stigma of being HIV+ has somewhat abated, a new set of pressures has arisen for those experiencing complications of long-term survival. The emergence of treatment as prevention, with its necessary emphasis on lifetime retention in care, fosters an upbeat narrative that frames treatment as being relatively benign, and with it the promise of an “AIDS-free generation.” At the same time, growing awareness of rising rates of opioid abuse in the broader population has made clinicians reluctant to prescribe medication for the chronic neuropathic pain experienced by many long-term survivors, especially when the patient has a history of substance abuse. The confluence of these factors serves to isolate long-term survivors and creates a new set of barriers for accessing effective treatment for side effects including crippling pain.

From the outset of the epidemic, communities with disproportionate burdens of HIV/AIDS have pioneered media- and technology-based approaches to influence public policy and clinical practice, as well as to offer information, empowerment and support. Early documentaries and the Names Project (AIDS quilt) insisted on visibility for the lives and stories of people living with HIV/AIDS (PLWHA). Peer-to-peer and geo-social apps connect those at risk for or living with HIV/AIDS with information, empowerment and support including treatment locations and peer ratings of caregivers. Now, innovations such as Everyone Included TM explicitly recognize the value of –and offer platforms for–patient expertise in shaping treatment decisions, and long-term survivors can play a critical role in helping providers understand the complexity of pain management in HIV care. This presentation will feature the experiences of long-term HIV survivors in seeking appropriate care. As part of a SAMSHA-funded initiative their video narratives will also be shared via social media to reach isolated peers, and as part of accredited online training for clinicians in psychiatry, psychology, social work, and primary care. The video and related training materials seek to 1) inaugurate a safe space for survivors to break out of isolation, share the elements of their experience that do not fit the larger narrative of positive survival, and participate fully in care decisions and 2) catalyze broader clinician engagement with the physical and psychosocial needs of this population. This session will feature short video outtakes and will be co-presented by Alfredo Hernandez Chavez, a long-term survivor and leading HIV activist in the Latino community. Rebecca Stoeckle, EDC Vice President and Director of Technology and Health, will offer contextual information on the challenges and opportunities of using technology and rich media to trigger and sustain changes in attitudes and practices among different clinical disciplines.

Rebecca Jackson Stoeckle is a vice president within EDC’s
Health and Human Development Division, where she directs initiatives in health
and technology. Her primary focus is the intersection between innovation and
impact in the use of technology to reach specific audiences, especially those
facing health disparities or challenges with language, literacy, or health
literacy. Additionally, she works with colleagues across EDC to develop and
deploy emerging methodologies to measure the impact of digital solutions to
health challenges.


Ms. Stoeckle’s interventions have reached diverse audiences,
including veterans returning from Afghanistan and Iraq, staff in community
agencies serving populations at high risk for HIV, and community health workers
in developing countries. Her projects have received national recognition and
awards for excellence in innovation and sustainable systems change.

Ms. Stoeckle  is a
graduate of Stanford University and was a Sage Fellow at Cornell University.

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