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.
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.
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.
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.