Swimming against a Tide of Ignorance

The Hepatitis C Outreach Project (HCOP) is the oldest organization in this country specifically dedicated to meeting the needs of people with hepatitis C (HCV). Its executive director, Teresa Hanbey, created HCOP as an Internet service in 1992 and has been swamped with requests for information ever since. HCOP has managed to meet those requests with an ever-growing library of research, resources, and professional advice.

Teresa Hanbey's mission is to raise awareness about HCV and promote its prevention and treatment. It is important to get the word out to more people-not only to healthcare professionals, but also to the growing number of people at risk who need to be tested.

Raising awareness about HCV is critical, since so many people already have the disease and are unaware of it. According to Hanbey, approximately 95% of those who would test positive, if properly screened, have not yet been diagnosed. This poses serious risks for a large and growing population, because of potential liver damage as well as increasing rates of transmission.

The current challenges for HCOP are to give physicians up-to-date information about HCV, to train community leaders to interpret clinical information for these members, and to educate patients to the highest level possible in order to create patient leaders in the HCV community.

To raise concern over HCV to an appropriate level, Teresa Hanbey spends a great deal of her time bringing people together to respond to the HCV crisis at national and local levels. For example, she has spoken to community leaders across the country and has invited African American leaders to attend an NIH conference on HCV.

HCOP has scored many "firsts" in the battle against HCV, including being the first to:

• Hold public HCV conferences in the United States and internationally
• Serve on a public health task force, on a Department of Health working group, and on scientific advisory boards
• Identify tattoos as a risk factor for HCV
• Reach out to women, adolescents, rural populations, and high-risk populations on the fringe of social services (such as bikers and intravenous drug users)
• Bring African American leaders to the NIH for a conference on African Americans and HCV
• Include organ transplantation and donation in its mission statement and promote organ donationOne of the priorities for the year 2000 is to develop programs for young people with hepatitis C. Although this group has received little attention until now, Hanbey points out that adolescents are increasingly practicing some of the key risk behaviors associated with HCV, such as body piercing and tattooing.

As a key consultant in the treatment and prevention of HCV, Hanbey and her group-a volunteer staff that includes lawyers, educators, medical professionals, and social workers-provide the latest available information on the disease. They also provide CME programs for doctors, assist community organizations, and serve on several policy-making boards. The Project is organized primarily through the Internet. You can access this important resource at <http://www.hcop.org>.