JHF Announces Minority AIDS Initiative Working to Engage HIV/AIDS Individuals “Lost to Care”

Many people with HIV/AIDS avoid diagnosis, enter treatment but then stop complying, or avoid prescribed treatment altogether. We call them “lost to care.” This has serious consequences for them, for their partners, for their living or unborn children, and for the economy.

The Jewish Healthcare Foundation (JHF) was awarded a $1.4 million, two-year grant from the Special Pharmaceutical Benefits Program (SPBP) and Pennsylvania Department of Health to tackle this difficult problem. Through the Minority AIDS Initiative (MAI), JHF is working with fifteen AIDS Service Organizations (ASOs) across the state, including Clarion University of Pennsylvania/Northwest PA Rural AIDS Alliance, to improve the quality of patient services, develop or strengthen programs to re-engage individuals lost to care, and reduce avoidable hospital readmissions for persons with HIV/AIDS.

Approximately 1.1 million people in the United States are living with HIV, with Pennsylvania ranking 6th in the U.S. by number and rate of new AIDS diagnoses in 2010, according to the Centers for Disease Control and Prevention (CDC). In addition, despite the introduction of highly effective antiretroviral therapy, only 25 percent of people with HIV in the United States are successfully keeping their virus under control.

As the fiscal agent for State funding, JHF sought proposals from interested and qualified agencies across the state of Pennsylvania to develop, or broaden and strengthen, programs to engage HIV positive individuals that have been lost to care. Lost to care individuals are defined by the Health Resource and Services Administration (HRSA) as persons living with HIV/AIDS (PLWHA) who have not received medical care within the past 180 days.

Under the terms of the grant, each ASO will receive extensive training and coaching in order to improve the quality of outreach services. Many organizations already work hard to re-engage individuals lost to care. Unfortunately, they may not have access to the program models, staff training, or quality improvement systems necessary to do so effectively. Programs for effective outreach exist, and MAI training and coaching will be geared to helping organizations adopt a specific model or develop their own based on the core components of existing models. JHF has a long history of helping organizations, especially safety net providers, adopt new best practice models and will utilize coaches and trainers with expertise in healthcare quality improvement and behavior modification/change management.

“We have nine rotating clinic sites throughout the thirteen county northwest region to which our nurses and HIV/HCV medical specialists travel in order to provide specialty care to our consumers,” says Leah Magagnotti, coordinator of clinical operations at Clarion University of Pennsylvania/Northwest PA Rural AIDS Alliance, “and serve 300-350 unduplicated consumers each year.

“But a substantial portion of HIV-infected patients have poor retention in care, and we just don’t have enough resources to reach them all. Poor retention in care predicts poorer survival with HIV infection. Through MAI, JHF will help us to develop the tools to become more efficient and effective in our work.

“There are so many unique aspects to this project, such as JHF staff working with us (and coordinating collaborative learning) to better understand the predictors of retention in care, the barriers that patients face that prevent full and continuous engagement in care, and the interventions that improve retention. Front line workers are being trained in motivational interviewing, for example, in order to help us to draw out and reinforce behavior change with respect to increased treatment engagement and adherence.”