This post was written by BLC Guest Blogger, Rob Quinn
In 2016, Massachusetts’ city and state health departments are in the process of updating their existing three-year strategic plans which detail principles, priorities, and actions to guide our collective state and city response to the HIV epidemic. As a member of both the Statewide Consumer Advisory Board (SWCAB) at the Massachusetts Department of Public Health, Office of HIV/AIDS and Boston EMA Ryan White Planning Council (RWPC), I have had the opportunity to participate in this process from a consumer perspective.
From the start, I and others called out both the SWCAB and RWPC, in advisory groups, on not including people living with HIV (PLWHA) over age 50 and long-term survivors (LTS) in their integrated planning agendas. By 2020, 70 percent of all PLWHA in the U.S. will be over 50. One way to further ensure that our voices are being heard is to talk the same language used by both city and state health departments—the language of data. We need to focus our collective efforts on the use of data to forecast service demand for aging populations of people at risk for and living with HIV; data to identify our emerging needs in a changing health care environment; and, to ensure access to and availability of the services most needed among aging individuals.
The role of consumers (both individuals at risk and those living with HIV) remains essential to advance new strategies that identify, link, and support adherence to care by local and state health departments and their contracted vendors. LTS have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many LTS have served as our own advocates since embarking upon a journey that continues to bring us into new and uncharted territories.
Consumer or stakeholder (a word that’s gaining agreement locally) engagement is taking on new importance given advances in medications, tools such as PrEP, and strategies to improve outcomes for those at risk and living with HIV disease. Consumers or “stakeholders” have the unique ability to collaborate and partner with health departments to identify ways to strengthen public health strategies.
For example, at our most recent SWCAB meeting, we engaged with senior staff and field epidemiologists/disease intervention specialists (DIS) on ways to strengthen patient and provider relationships to lessen barriers to care, particularly among people of color. Engagement fosters the improvement of practices for improved quality and outcomes.
Massachusetts is committed to engaging consumers in meaningful ways to strengthen our public health response. A cornerstone of this strategy is “engagement” – purposeful, facilitated, and accountable – in our current groups and in ad-hoc planned discussions. We have a strong infrastructure, including formal advisory groups and robust connections with stakeholders and related groups, but more needs to be done to prepare for an aging population with HIV.
The best practice of HIV prevention and care involves more than programming that targets reducing new HIV infections and achieving viral suppression; it should prioritize creating health equity for all, including PLWHA over 50. Health equity entails everyone having the opportunity to achieve their optimal level of health. To accomplish this, it means more will need to be done to make that happen.
On a city, state and national level, my call to action for the immediate future includes asking health departments:
- How is your jurisdiction assessing and responding to the needs of PLWHA over 50?
- How are your advisory groups and community engagements reflecting PLWHA over 50?
- What will the National Association of State and Territorial AIDS Directors (NASTAD) do to highlight the needs of persons living with and at risk for HIV who are over 50?
Add YOUR voice! Whether a person living with, affected by or at-risk for HIV/AIDS, a provider, community leader or concerned person, how will you get involved? Whether or not you are directly impacted, we are all affected by HIV/AIDS.