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Reaching Out to the HBV Community

Our first endeavor was to establish a support group in San Francisco specifically for HCV positive people at QuanYin Healing Arts Center. Our support group format was unique within the hepatitis C community because we focused on emotional support. This support group was modeled after the support group format developed by the AIDS Health Project of the University of California at San Francisco (UCSF), but was structured to meet the specific needs of our HCV positive and HIV/HCV-coinfected members. The following year we introduced HCV informational meetings in San Francisco and helped other HCV positive people from around the San Francisco Bay Area start their own support groups.

The level of information on HCV in 1997 was minimal, with more misinformation than quality information available to the HCV community. Our goal was to provide high quality materials that were accessible and easy to understand. We wanted to help people understand HCV so that they could advocate for themselves and others and make educated decisions regarding management and treatment of HCV. The first material developed was the HCV Informational Packet. We designed the packet in copy-ready format and encouraged individuals and agencies to reprint it as needed. Today, this document is the foundation of our educational materials and is consistently updated to contain the latest information. In addition to the HCV information packet, we have developed other educational materials that are considered by many providers, support staff, and patients to be the best educational materials available to the community.

Extending Education - The HCV Advocate Newsletter

In 1997, HCSP decided that there was a need for an HCV patient newsletter to specifically address the unique needs of our community. The HCV Advocate newsletter was launched in January 1998. Our goal was to provide unbiased information to help people make educated healthcare decisions. The first couple of issues contained only articles reprinted from other organizations. Soon thereafter, we began producing original articles geared toward people with HCV. The newsletter is designed to meet the needs of providers, support staff, patients, and their families. The HCV Advocate quickly grew in size and stature, and is now considered one of the most informative and respected HCV publications in the U.S.

Establishing an Online Presence - The HCV Advocate Web Site

In 1998, HCSP determined that another unmet need for people with HCV was a Web site that focused on quality education, advocacy, and support for the HCV community. The HCV Advocate Web site began operation in January 1999. It began with a minimum of information, but grew quickly in size and content to become a valuable resource for patients and healthcare providers. The success of the Web site stems from the fact that HCSP constantly adds and expands the site with new educational content and tools, such as our recent addition of a Spanish section. Our new HCV Advocate Medical Writers' Circle section features articles by nationally respected leaders in HCV care and research. Thanks to our ongoing growth and the valuable services we provide, Web site traffic has quickly grown to average more than 25,000 hits per week.

Online and Beyond - Outreach Programs and Forums

Based on a needs assessment by our agency in 2001, we decided that a major resource need was quality HCV education that could be widely distributed and utilized throughout areas impacted by HCV. To accomplish this objective, we designed two programs that would educate patients and providers and train individuals to themselves become HCV educators in their respective communities. Areas targeted for our first series of outreach programs are rural communities in Northern and Central California, with a projected launch for a national training program at the end of 2002.

The goal of the community forums and Train the Trainer workshops is to provide unbiased and quality education to the HCV community and to the general public. Our vision is to provide interactive public forums for the local community and Train the Trainer workshops that will provide certified HCV educators for local agencies.

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