B Informed Patient Conference 2005
B INFORMED PATIENT CONFERENCE NOTES
July 9-10, 2005
Please know that these conference notes are NOT official transcripts of the meeting! They are an informal summary that has been compiled from the notes of several people who attended, but are not experts in the field.
This summary is being made available as a courtesy only; therefore, please be sure to speak with your health care provider (or attorney if filing a disability claim) if you have any questions about the information in these notes.
The Hepatitis B Foundation, in collaboration with the Internet Hepatitis B Information and Support List (www.hblist.org),was pleased to host the 5th Annual B Informed Patient Conference, this summer. More than 80 people traveled from across the country (and as far away as Guatemala and Scotland!) to participate in this two day gathering of friends.
Sherree Martin and Steve Bingham, HB-List "Mom and Dad"
Between hearing about Wendy Marx who underwent two liver transplants due to chronic hepatitis B and transformed her experience into helping others, learning from experts in the field about disability and the latest treatment updates, and sharing informally with one another during mealtimes and evenings, this year’s conference continues the momentum of building a strong and visible hepatitis B community of patients, families, health care providers and researchers.
- Wendy’s Story
Jeffrey Marx, Pulitzer Prize Winning Journalist
- HBV and Disability Issues
Mark Silver, Esq., Disability Attorney
- Everything You Wanted To Know About HBV, But Were Afraid To Ask!
Expert Panel of Physicians – Dr. W. Thomas London, Dr. Minh Nguyen, Dr. Ken Rothstein, and Dr. Eddie Cheung
- Current and Evolving Therapies for Chronic Hepatitis B
Dr. Rajender Reddy, Director of Hepatology and Medical Director of Liver Transplantation at the University of Pennsylvania, Philadelphia, PA
WELCOME AND INTRODUCTIONS
Saturday, July 9, 2005
Ms. Molli Conti, HBF Vice President for Community Outreach
On behalf of the Hepatitis B Foundation (HBF) and the Hepatitis B Support List (HB-L), Ms. Conti welcomed and thanked everyone for attending this year’s conference. The goal of the meeting is to not only learn new information to help patients and families manage this disease, but to also make new friends and share experiences on a personal level.
The HBF is involved in a number of important national initiatives that is putting hepatitis B in the spotlight and making sure that the “B" is not forgotten:
- National HBV Awareness Week – This year the U.S. Congress passed a unanimous resolution calling for the first ever National HBV Awareness Week, May 9-16, 2005! This was complemented by the “AIM for the B” awareness campaign that included two patient forums (Phila and San Jose) and two media events (New York City and San Francisco). The HBF was the nonprofit sponsor in partnership with BMS.
- National Viral Hepatitis Roundtable (NVHR), which is a coalition working on a national strategy to eliminate viral hepatitis in the U.S. The final strategic plan is currently being reviewed by the NIH and CDC, and will be published this fall.
- First Congressional HBV Briefing – On July21, 2005, the HBF has been invited to moderate the first ever Congressional Briefing on the problem of HBV in the U.S. This briefing was initiated by U.S. Sen. Rick Santorum (PA) and continues the momentum of the “AIM for the B” campaign started in May of this year.
- HBV Congressional Bill – U.S. Rep. Mike Honda (CA) has also continues to work with the HBF, and other nonprofit groups, towards the introduction of landmark legislation in Congress to promote and fund programs to increase HBV awareness, prevention, treatment and research. Hopefully, the HBV Bill will be introduced as early as this fall.
- Social Security Administration Briefing – HBF was invited to provide expert testimony as Social Security reviewed the “medical listings” for hepatitis B this past year. We were pleased to have testimony from members of the Hepatitis B Support List. Thank you!
- ACIP/CDC HBV Vaccine Recommendations – ACIP is reviewing the hepatitis B immunization requirements for adults and children. In June, the meeting focused on children, specifically strengthening the infant hospital birth dose recommendations. They will meet in October to talk about possible universal adult recommendations for HBV immunization, not just those considered to be at high-risk due to occupation or other risk factors. The HBF has been asked by the CDC to provide testimony at these meetings.
Additional Welcome and Comments
Dr. Timothy Block, HBF President
Dr. Block believes that the HBF is becoming THE most important voice for hepatitis B advocacy and research and it is proud to have this responsibility. He is also pleased to say that the HBF is doing a remarkable job in outreach and advocacy, and this unique annual patient conference is just one example of the good work it does.
In research, HBF continues to advance its drug discovery program by screening more than 80,000 compounds. In less than a year, the HBF’s new research institute, called the “Institute for Hepatitis and Virus Research” (www.ihvr.org) has already identified a promising family of 3 compounds that show activity against the hepatitis B virus (HBV).
Another example is that the HBF/IHVR proteomics lab has identified a serum marker to help determine who with chronic HBV will develop primary liver cancer, or hepatocellular carcinoma (HCC), which is one of the most serious consequences of chronic hepatitis B. This serum marker is now being developed in partnership with the “EDRN” at the National Cancer Institute of the NIH for studies in humans. It may be prove to be more successful than AFP, the current blood test used to detect potential HCC development.