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Executive Summary

At the Crossroads: Hepatitis C Infection in Maine

A Comprehensive Statewide Needs Assessment
The Maine Hepatitis C Infection
Needs Assessment Steering Committee

February 2001


Published by the Maine Center for Public Health for the Maine Hepatitis C Infection Needs Assessment Steering Committee

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Hepatitis C is a growing--and costly--public health threat to the people of Maine.

Hepatitis C virus, an easily transmitted, bloodborne infectious organism, results in chronic infection of the liver in 85% of those exposed. This one infection contributes to 40% of chronic liver disease in the country.  It is the leading indication for liver transplantation in American adults.

An estimated 15,000 Maine residents have chronic hepatitis C infection. Yet, because of the slow progression of the disease and its lack of outward symptoms early on, most are totally unaware of their infection.  Since most infected persons have not been tested, their opportunities for preventive and therapeutic care are being lost. Of the estimated 15,000 Mainers now infected with the hepatitis C virus, fewer than 2,000 have been tested or have received medical care for their infection.

Even so, with just about one-in-ten Mainers with hepatitis C infection identified and in treatment, the epidemic is estimated to have cost Medicaid over $12 million last year--a six-fold increase in four years.  And this is just the beginning.

Maine has arrived at a crucial juncture--a crossroads--in the hepatitis C epidemic in our state.  This report seeks to give a full description of where we are and the choices before us as a state.

What has Maine been doing to address hepatitis C infection? 

In 1997, the Maine Bureau of Health (BOH) initiated mandatory case reporting of chronic hepatitis C infection.  In December of that same year, the BOH convened the first quarterly meeting of the Maine Hepatitis C Working Group. This group included clinicians, patient advocates, and public health professionals interested in sharing information.  Most of its efforts focused on educating primary care physicians about hepatitis C infection.

During 1999, in response to growing concern that a comprehensive approach to hepatitis C was needed, the BOH convened a subcommittee of the Working Group to plan a needs assessment in Maine.  This became the Maine Hepatitis C Infection Needs Assessment Steering Committee.  The Committee included individual members of the Hepatitis C Working Group and other invited participants from the Department of Human Servicesí Bureau of Medical Services, the Maine Center for Public Health, the Department of Corrections, and the Office of Substance Abuse Services of the Department of Mental Health and Mental Retardation.

After developing a plan for the needs assessment, financial resources were obtained from the Maine Bureau of Healthís Division of Disease Control, as well as from Schering Oncology Biotech, Glaxo SmithKline Beecham, and Merck & Company corporations.  The Maine Center for Public Health served as the groupís fiscal agent. In April 2000, Judy Storfjell, PhD, RN, a consultant with Lloyd Associates in Berrien Springs, MI was retained to conduct the assessment.

Between May and September, 2000, Dr. Storfjell gathered information about hepatitis C infection in Maine from a variety of sources. She conducted focus groups with representatives from the Office of Substance Abuse, the Department of Corrections, Maine AIDS service organizations, and a community hepatitis C infection support group.  All of the groups were convenience samples created by the participating agencies.  Dr. Storfjell also conducted twenty individual interviews with representatives from Maine AIDS service organizations, hepatitis C infection primary care providers, and hepatitis C patients from different areas of the state. 

Other components of the assessment included: a review of Maine hepatitis C epidemiologic surveillance data and hepatitis C infection health care expenditure data; a review of the medical and public health literature; and phone interviews with public health officials from other states.  Additional data were collected through two surveys: one, a sample of primary care health providers and gastroenterologists in Maine (conducted in collaboration with Portland Public Health), and the other a national survey of prison medical directors (conducted in collaboration with the Department of Corrections).

On November 9, 2000 the results of the needs assessment were presented to the Steering Committee and these findings were reviewed and discussed.  Through a consensus-building process, the Committee determined six recommendations for addressing hepatitis C in Maine.  These recommendations are presented in the final section of this report.  

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 1 While these corporations partially funded the needs assessment, they did not guide, review, or in any other way participate in the needs assessment.