B Informed Patient Conference 2001
From as far away as Spokane, Chicago, and Dallas, forty people living with chronic hepatitis B attended the first patient conference "B-Informed 2001" the weekend of June 8 - 10. The Hepatitis B Foundation (HBF) in collaboration with the Online Hepatitis B Information and Support List (HB-L) sponsored this groundbreaking meeting just for "hepBers".
For the first time, patients were able to freely pat each other on the shoulder or embrace, show their tears and share their laughter. The conference blended the emotional, the practical, and the intellectual. As the patients soaked up information from experts, they began to feel less alone in their daily struggle with this chronic disease.
The meeting started with introductions and welcome comments from the HBF and the HB-L. Chari Cohen, MPH, kicked off the information sessions with a presentation about results from her survey conducted this past winter using the HB-L support group.
Paul Cohen, Esq. spoke about employment issues in the context of the American with Disabilities Act (ADA). "This powerful statute provides protection for people who are unable to perform work or who are perceived as being unable. It can protect you from unfair treatment caused by reality or perception."
Key points in ADA law are that it could protect patients, that employees have rights, and employers (with 15 or more employees) are required to make an effort to accommodate health problems or disabilities. But, patients must speak up and talk to their employees about their situation.
For insurance problems, there are "appeals processes" for every health plan that may be used if coverage or reimbursement for treatment is denied. States generally have insurance boards where patients can also appeal insurance company decisions.
Research and Treatment
The most recent research was presented on antivirals, immino sugars, and combination therapies. "We look for an anti-viral treatment anywhere we have a lead," stated Dr. Tim Block. He provided a highly informative talk using simple analogies to explain the disease, the research and treatments.
An update on adefovir dipivoxil, a drug in phase III clinical trials, was provided by Gilead. Participants interrogated the drug reps, demanding an explanation of the FDA approval process and why treatments are available in other countries that are not available in the U.S. Gilead explained that there are so few HBV drugs in this country because the drug development process is a complicated and tedious process that may take 10 to 15 years.
Patients expressed concern about potential kidney damage due to adefovir. Gilead explained that this was a problem identified in early trials of the drug for HIV. In those trials, HIV patients were given 160 mg compared with only 10 mg for HBV patients. Since the clinical trials for HBV are not yet completed, the question about nephrotoxicity cannot yet be fully answered.
Drs. Tom London and Ken Rothstein led a lively Q&A session about treatment and liver transplants. Most participants sought information on their personal situations. While their questions were answered, both doctors repeatedly advised them to go back and talk with their own doctors or seek a second opinion if they were unsatisfied. As Dr. Rothstein stated forcefully, "I've been a patient for non-hepatitis illnesses, and my best advice is that you have to put your docs' backs against the wall to get the answers to all of the questions that you're asking today."
The question of how much of a variable cirrhosis is for liver cancer was raised. The answer is that cirrhosis increases risk tremendously and patients should be monitored frequently. However, 25 percent of patients who develop liver cancer have normal alpha-fetoprotein (AFP). Therefore, Dr. Rothstein emphasized the importance of receiving regular ultrasounds, which will catch small tumors as soon as three months after the most recent screening.
The risks and benefits of liver biopsy were discussed extensively. Of note is that not all chronic carriers nor all liver tranplant candidates require biopsies. With any biopsy, there is always a risk of bleeding and/or "seeding" additional virus through the liver as a result of the process, thus each decision is individualized.
E Antigen "Flip Flop"
Most patients believe that once they seroconvert from HBV e-antigen positive to negative (HBeAg-), and then produce antibody to the e-antigen (HBeAb+), this is a permanent result. It has been discovered, however, that there are patients who will "flip-flop" between e-antigen negative and positive for awhile before finally stabilizing. Other patients will continue to bounce back and forth indefinitely. Although this "flip-flop" is known to be an immunological response, the biological mechanism is not yet understood.
Dr. London also explained that the e-antigen is only a surrogate marker that does not necessarily have any pathogenic meaning. HBV DNA levels provide more information about the liver's condition than the e-antigen or e-antibody status.
Same Time Next Year?
The information sessions concluded Saturday evening outside under the stars with HB-L members sharing their expertise.
Christopher spoke about nutrition, the importance of listening to your body for what it needs; Pam spoke about 'activism" and encouraged "hepBers" to learn from the HIV community to effect positive change; and Maureen spoke about the concerns of parents with children who have HBV.
Finally, the participants shared personal comments about the conference and everyone unanimously agreed that there should be another meeting next year because there is still so much more to learn and share. As one participant summed up so well, "This was an excellent meeting for information and it was really fantastic meeting all those screen names in person. Cyber contact is fine but it will never replace human connections!"