A Community Experience Responding to Hepatitis C

Abstract

The South Bronx neighborhood in New York City (NYC) is disproportionately affected by hepatitis C, with a rate of reported hepatitis C cases approximately twice the rate for all of NYC (260 vs. 138 reported cases per 100,000 residents in 2004) (unpublished data, NYC Department of Health and Mental Hygiene [DOHMH] Bureau of Communicable Diseases). In 2004, collaboration between the South Bronx community and the Hepatitis C Program of the NYC DOHMH yielded the South Bronx Hepatitis C Task Force (SBHCTF). The DOHMH Hepatitis C Coordinator recruited community residents and health-care providers concerned about hepatitis C to participate in the SBHCTF. Initially, a steering committee of eight dedicated individuals with firsthand hepatitis C knowledge and influence in the South Bronx was organized, including two physicians, two physician's assistants, two executive directors of community agencies, and two DOHMH staff. At the first SBHCTF meeting, mission and goals were drafted, information was presented on two South Bronx programs that offer integrated viral hepatitis services, and a survey to help identify the community's greatest hepatitis C service needs was administered to participants. The 70 participants at this meeting included providers who serve people affected by hepatitis C (e.g., doctors, nurses, physician's assistants, community advocates, epidemiologists, psychologists, addiction counselors, social workers, program directors, pharmacists, and lawyers) as well as individuals infected and affected by hepatitis C. At the next meeting, results of the survey were reviewed and participants worked to make recommendations to address the following critical hepatitis C concerns identified in the survey: (1) identification of available hepatitis C services, (2) development of peer-delivered services (support and education), (3) improved access to sterile syringes, (4) improved community awareness, (5) increased knowledge of hepatitis C among providers, (6) increased mental health services to facilitate and accompany treatment, and (7) improved service linkages for people released from jail or prison. The steering committee met separately and prioritized the issues the Task Force wanted to address, based on potential for completion and impact on the community. At the third meeting, three SBHCTF working groups were established to develop the top hepatitis C action items: creating a resource guide, initiating a peer support group, and developing a patient education guide. The groups met and reported progress regularly to the full SBHCTF at monthly meetings through project completion. Three important project outcomes were: (1) creation of the “Hepatitis C Services in the South Bronx” directory, which lists hepatitis C-related services in the South Bronx (e.g., substance abuse treatment, medical care) and includes information such as types of payment accepted and treatment eligibility for active drug users; (2) establishment of a monthly hepatitis C support group, led by volunteer medical providers; and (3) creation of a patient pocket guide, “Hepatitis C: How to Stay Healthy and Informed,” a practical education tool for patients newly diagnosed with hepatitis C that outlines steps patients can take with their medical provider following a hepatitis C diagnosis. The pocket guide has been adapted and used by other health departments. The service directory and pocket guide are available online (http://www.nyc.gov/html/doh/html/cd/cdhepc-hcp5.shtml). The DOHMH originally contributed $50,000 to support the projects, and civic groups, pharmaceutical companies, and social service agencies donated resources such as mailing lists, printing and graphics services, distribution of meeting notices, and food for meetings. Another outcome of the SBHCTF work was a Substance Abuse and Mental Health Services Administration (SAMHSA) funding award for a project to integrate substance use, human immunodeficiency virus, and viral hepatitis prevention in community-based services targeting minority residents and residents reentering the community after release from jail or prison. The SBHCTF Steering Committee serves as the Advisory Board for the SAMHSA project, which has established a coordinated care model for facilitating access to prevention and case-management services by the residents of the South Bronx and inmates of city correctional facilities who return to the South Bronx. The SBHCTF accomplishments illustrate the power of a motivated group of people from different organizations, collaborating toward common goals to tackle an important health issue such as hepatitis C. The SBHCTF continues to evolve, currently focusing on expanding mental health services for people with hepatitis C, providing training to community-based organizations and medical providers, and helping to initiate similar task forces in other NYC boroughs.