On July 26, 2021, the O’Neill Institute convened a diverse array of HIV community stakeholders for a virtual consultation meeting entitled “Quality of Care and Quality of life for People Living with HIV: Outcomes and Priorities Beyond Viral Suppression.” The O’Neill Institute consulted with networks of people living with HIV to develop the meeting agenda. Meeting consisted of panel and group discussion sessions considering the various questions, including: (1) What is success in responding to the needs of people living with HIV beyond viral suppression? (2) How do we address stigma, discrimination, and trauma as part of improving quality of care and quality of life for people living with HIV? (3) How do we measure quality of care and quality of life, and what are key indicators to monitor progress in these areas? and (4) What critical actions are needed to improve quality of care and quality of life for people living with HIV?
The meeting agenda can be found below, along with the list of meeting participants. The O’Neill Institute will develop a short brief for policymakers and the HIV community that is informed by the meeting and that identifies priority actions for improving quality of care and quality of life among people living with HIV in the United States. The brief will be released in late 2021.
1:00-1:30pm Welcome, Introductions, and Goals of the Meeting
Opening Presentation: Jeffrey Crowley, O’Neill Institute
1:30-2:15pm Setting the Stage: People Living with HIV Leading the Way on Emphasizing HIV Outcomes and Priorities Beyond Viral Suppression
Moderator: Naina Khanna, Positive Women’s Network – USA
- Martha Cameron, International Community of Women Living with HIV – North America
- Mark Misrok, National Working Positive Coalition
- Larry Walker, Thrive SS
- Cecilia Chung, Transgender Law Center
- What is success in responding to the needs of people living with HIV beyond viral suppression?
- What are the most pressing health issues for people living with HIV?
- What does providing high-quality HIV care look like?
- How do we define health-related quality of life for people living with HIV?
- How do we ensure overall health and wellness for people living with HIV over the course of their lives?
- What are critical social and economic issues impacting quality of life among people living with HIV?
2:15-3:00pm How do we address stigma, discrimination, and trauma as part of improving quality of care and quality of life for people living with HIV?
Moderator: Tori Cooper, Human Rights Campaign
- Vanessa Johnson, Positive Women’s Network – USA
- Celeste Watkins-Hayes, University of Michigan
- Edward Machtinger, University of California San Francisco
- What kinds of stigma do people living with HIV experience? How is HIV stigma intertwined with other forms of stigma and discrimination, such as those related to age, sexual orientation, gender identity, race/ethnicity, mental health, substance use, sex work, socio-economic status, and/or immigration status?
- What are gaps in understanding stigma that need to be further explored?
- Why do we need to prioritize stigma? How is stigma connected to health outcomes, social isolation, and quality of life? How is stigma connected to health inequities?
- What are best practices for measuring and monitoring stigma as part of the HIV response?
- What are effective interventions for reducing and overcoming the stigma and discrimination that people living with HIV experience? How do we ensure that people living with HIV can live a life free from persecution by the state?
- What impact does trauma, including past trauma, current trauma, and trauma associated with accessing care due to bias and stigma from health care professionals, have on the physical, behavioral, social, and sexual health of people living with HIV? How can trauma-informed care improve outcomes in these health areas? What are strategies for implementing and scaling up access to trauma-informed care in both HIV and primary care settings?
3:15-4:00pm How do we measure quality of care and quality of life? What are key indicators to monitor progress in these areas?
Moderator: Greg Millett, amfAR
- Keri Althoff, Johns Hopkins Bloomberg School of Public Health
- Marlene Matosky, HIV/AIDS Bureau – Health Resources and Services Administration
- Robert Remien, Columbia University Irving Medical Center
- Andrew Spieldenner, MPact Global Action and United States People Living with HIV Caucus
- What are metrics beyond viral suppression to help identify opportunities for improving the care and lives of people living with HIV?
- Is there agreement on the best set of core metrics?
- What patient-reported outcomes measure exist to capture health-related quality of life specific to HIV and more generally?
- Are new metrics needed for measuring and tracking quality of life? Should metrics encompass self-reported quality of life? What about comorbidities or social determinants?
- Which measures are most important? How do we hone down on a few measures and ensure that collection is not burdensome?
- How do we monitor progress? What are effective monitoring strategies so that targets are used to achieve goals?
- How do we set achievable national targets? Are there tools for jurisdictions to use in establishing their own targets?
4:00-4:45pm What critical actions are needed to improve quality of care and quality of life for people living with HIV?
Moderator: Venton Hill-Jones, Southern Black Policy & Advocacy Network
- Marlene McNeese, Houston Health Department
- Laurel Sprague, UNAIDS
- Ronald Johnson, US People Living with HIV Caucus
- What are the most important actions we (e.g., state Medicaid programs, Ryan White programs, CDC, ONAP, etc.) need to take to improve quality of care and quality of life for people living with HIV?
- What are the successes to build on? Where we have seen successes, what are key facets of the approaches used?
- How can the integration of HIV services with non-HIV services (e.g., sexual and reproductive health services, mental health services, substance use disorder services, aging services), as well as the use of and satisfaction with those services, be improved?
- How do we ensure health equity and the meaningful involvement of people living with HIV in a national HIV response focused on quality of care and quality of life?
- Are there lessons that the United States can learn from the HIV response in other countries where quality of care and quality of life are being addressed?
4:45-5:00pm Concluding Comments and Adjournment