What will it take to end the HIV epidemic in your jurisdiction? Now is the time to gather your strategy. The initiative’s work starts with community planning councils (not their real name, the final name has yet to be determined). Their job is to put together the local plan. Sometime in FY 2020, funds will hopefully be granted to implement the priority components of the local plans. With ongoing data collection and shared evaluation tools, successful programs can be identified and replicated.
Our planning is missing scientifically approved interventions that successfully keep people living with HIV (PLWH) and people on PrEP in healthcare and on meds. NMAC believes this information is key to our ability to end the HIV epidemic. While health centers are a great place to get healthcare, they don’t have the retention services this initiative requires to be successful. Retention and adherence efforts should be done through community-based organizations with a proven track record of reaching the priority populations. All the interventions should be led and staffed by the people the intervention hopes to reach. These efforts must work closely with their Center for AIDS Research (CFAR) to document the implementation science needed for more funding.
NMAC believes there are three key pillars for community to prioritize:
- Community Planning Councils
- Program Implementation
- Evaluation
Community Planning Councils
Soon $30 million in new planning money will go to 58 jurisdictions to build plans to end the HIV epidemic in their city, county, or state. Local planning groups should reflect the local HIV epidemic. Now is the time to identify leaders to add to existing or new planning councils, particularly leaders from the communities with the greatest need. While many jurisdictions have comprehensive plans, they tend to be limited to resource rich regions. There are many jurisdictions that need support and should be prioritized for training and technical assistance.
NMAC believes local planning councils should lead with race and:
- reflect the demographics of the local epidemic
- prioritize people living with HIV
- use transparent decision-making process
- have transparent distribution of resources
- be data driven
- understand that data for the transgender community is often incomplete
- receive training and technical assistance on biomedical HIV prevention, use of data, retention in healthcare, evaluation and other topics of value
- offer specialized training that supports underrepresented communities to sit at the table
- develop web portals that use technology for transparency and to manage the planning councils
Program Implementation
Plans to end the epidemic should prioritize interventions that successfully retain PLWH and people on PrEP in healthcare and adherent to meds. There is a long-term behavioral component to this biomedical solution, particularly for PLWH who have fallen out of care. It has been well documented that too many people over 50 living with HIV suffer from stigma, isolation, and depression. Programs must incorporate trauma-informed care to reach those most vulnerable and address the mental health challenges that impact too many living with HIV.
NMAC believes planning councils should prioritize:
- biomedical solutions (PrEP & U=U)
- HIV wrap around services that allow biomedical solutions to work
- STD and hepatitis testing to identify people who could benefit from PrEP
- funds for community organizing of at risk populations to boost outreach efforts
- funding for community-based organizations
- transparent grant making
- program led and staffed by the communities the initiative hopes to reach
- mental health services that are key to reaching the most vulnerable
Evaluation
The planning councils and the programs being implemented need clear evaluation tools in advance of implementation. The tools should help both the councils and the providers better understand the success and challenges of the planning process and the programs being implemented. Transparency of data is critical to successful replication.
NMAC believes evaluation should be based on:
- real numbers, i.e., the number of PLWH who are retained in care and their viral load and the number of people who have stayed on PrEP for longer than 12 months
- national criteria/standards so that initiatives can compared across jurisdictions
- inclusion of CFARs, which should be brought into the process from the beginning
- annual in-person updates for the community on the success or challenges of the initiative
- data that are placed online for everyone to access
Reaching the 400,000 PLWH and 975,000 more people on PrEP requires strong linkages to the target communities. Community organizing is key. Efforts from the government can be viewed with suspicion. Now is the time to support networks of people living with HIV and people on PrEP. Government solutions need the buy-in and trust from the communities they hope to reach. Too many previous attempts were highly proscribed. It is time to shift the HIV paradigm to prioritize 400,000 PLWH and 975,000 more people on PrEP.
Yours in the struggle,
Paul Kawata
