B Informed Patient Conference 2003
Highlights of the "B-Informed 2003" Patient Conference
July 21-22, 2003 Doylestown, PA
by Pam Ladds, RN, Conference Moderator
B Informed 2003 Conference attendees with OLiver, the HBF Liver Mascot
Gathering of Friends
More than 70 attendees from as far away as India and all across the U.S. gathered on the campus of Delaware Valley College in Doylestown, PA, for the 3rd Annual B-Informed Patient Conference, sponsored by the Hepatitis B Foundation (HBF) and the Hepatitis B Information and Support Listserv (HB-List). Conference veterans were excited to meet up again and “New-B’s” were happy to meet List mates.
We began the conference with a Meditation workshop, an introduction to the process and its benefits, and a great way to clear our brains for new information. Molli Conti, HBF vice-president for Outreach, then officially started the conference with an introduction to the HBF team, gave a brief history and updated us on the organization’s growth over the last year. We were impressed!
Steve Bingham and Sheree Martin, HB-List Mom and Dad, gave a brief history of the list. HB-L is the starting point for many people on their journey through the hepatitis B maze, and is an important source of support and information. The majority of attendees at the conference had learned about it through the List. Of course everyone wanted a hug from Steve and Sheree!
Christine Kukka and Maureen Kamische, from Parents of Kids with Infectious Diseases (PKIDs), gave a fascinating description of two trips to China to educate orphanages, doctors and laypeople about hepatitis B. Their interest and energy for the prevention of the further spread of hepatitis B is enormous. We learned about the challenges they faced in teaching universal precautions, prevention measures and safe injection techniques to the Chinese medical community, when basic supplies are very limited.
Eliminating the Voodoo from Hepatitis B
Sam So, M.D., Director of the Asian Liver Center at Stanford University, gave a highly entertaining, impassioned and informative presentation demystifying hepatitis B and thoroughly rousing our inner activists. He rapidly demolished some our beliefs as “voodoo” that are based in superstition and not fact. His own conversion from “conventional” medical approach to an “activist” approach was because of the many myths that caused unfair disparities in treatment access and options. For example, many in the conventional medical community believe that Caucasians will do better on certain treatment than Asians, or that those with alcoholic cirrhosis will be better transplant candidates than those with chronic hepatitis B.
Dr. So pointed out that faulty science is often behind these beliefs. His professional development from transplant surgeon to liver cancer expert was driven by his passion to reach more people and advocate for hepatitis B and ultimately, liver cancer prevention, particularly in the Asian population where it is an endemic health problem.
He separated out facts from myths. We were reminded that HBV is a silent killer; that 1:10 of those with chronic HBV are not up-to-date about current treatment options; HBV kills 1 million people every year; and it is the 10th cause of death worldwide.
Dr. So challenged us to explore our own assumptions and biases – what tests we should have, how often we should be screened, the importance of including liver cancer screening in the regular monitoring, and how and what we should consider “normal”. Looking at the different treatment protocols from other countries, particularly those with high HBV and a well-established medical system was clearly a good idea!
Breakout Sessions I
A sign of a growing conference is when there are session choices! The afternoon offered “Hep B 101 for New-B’s” and “Hep B Info Plus - Precore Mutants, Genotypes and Difficult Questions”.
Hep B Info Plus
This session was packed as attendees bombarded Drs. Minh Nguyen of Fox Chase Cancer Center, Sam So, and Sharat Misra of the HB-L List with challenging questions. This was the first session in which it became obvious that experts don’t always agree or follow the same treatment protocol. This was both the good news and the bad news. Good, in that it means this is a growing and changing field and it is through experts challenging each other and being challenged in return by hepB’ers, that effective treatments will be developed. Bad, in that it is confusing and means the buyer must beware!
This was a highly technical discussion exploring disease characteristics, genotypes, viral mutations and their implications for treatment. Practice guidelines clearly varied by demographic group, depending not only on the individual’s personal history and HBV biology, but also according to physician preference and experience.
The two most important reminders were that not everything relates to hepatitis B and that blood tests can be confusing or misleading. For example, an elevated ALT, a liver enzyme that is considered the gold standard for indicating the state of the HBV-infected liver, can be related to common medications or other infections. As we were told, “Important principles may, and must, be flexible - always look at the whole person before making treatment decisions.”
Treatment Topics and Liver Cancer
Liver cancer (the medical term is “hepatocellular carcinoma” or HCC) is a significant complication of chronic HBV affecting 1:4 unscreened or unmonitored people living with the disease. The statistics soar to 1:2 for unscreened/unmonitored males. These are not statistics for the faint hearted! Chronic HBV is the cause for 80% of the world’s liver cancer! This of course leads to the question of why HBV receives so little recognition and funding.
Breakout Sessions II
Those living with HBV listened to a presentation by the pharmaceutical company Roche about pegylated inferferon, an exciting new alternative to interferon alpha. Although they presented data about hepatitis C, since the HBV data is limited, the hepBers had an opportunity to voice their questions and concerns to the Roche speakers.
Partners, Friends and Families
Living with chronic illness is a challenge not only for the person with HBV. This group provided a forum for those affected, but not infected, to look at their own lives and concerns. They learned about the importance of “self care” while providing support to their loved ones.
End of the First Day
All of the sessions continued well over their allotted time, only stopped by the need to transition to the next speaker. We ended day 1 with the traditional barbecue. Discussions stimulated by the workshops continued around the tables. Old friends from previous conferences dropped in to socialize and even OLiver, the HBF liver mascot, showed up. Apparently he’s a real party liver!
Apparently we all decided sleep was something we’d catch up with later. Breakfast was packed and the second meditation session well-attended. Rejuvenated, we jumped into the second day’s sessions.
Hepsera (adefovir dipivoxil) Update
Gilead’s representative found herself with a tough audience. As usual, there were more questions than answers, despite her best efforts. Concerns were raised about the lack of long term follow up from Expanded Access Programs and, given that Hepsera is a DNA chain terminator, the implications that this has for pregnancy and fetal development. Children’s trials are just beginning, so little information was available.
We discussed treatment side effects, when to discontinue and when to switch medications. Questions were asked about the availability of Tenofovir as treatment for HBV. There was no answer to this.
Hep B and Kids
This report will be provided in the Fall newsletter issue and posted on the website in the next 6 – 8 weeks, so be sure to check back!
Psychological and Social Issues
In the rush to obtain as much medical information as possible, we often forget that we live in the real world where psychological and social pressures are enormous. Dr. Cynthia Weaver presented information focusing on ways to support family strengths as an important means of coping with a chronic medical condition.
HBV Drug Watch Update
Another packed session greeted Dr. Tim Block, HBF President and Director of the Jefferson Center for Biomedical Research. Although there are unlimited “potential” pharmaceutical treatments, few are being studied. New FDA rules ensure that studies will include other countries with high incidences of HBV. The hope is that as scientific knowledge advances and clearer virologic profiles emerge, it will be easier to target treatment that is more effective. The future of pharmacologic treatment is wide open with no answers yet.
For example, do we take immune enhancers with the risk of a liver crisis? Are single medications the answer, or is a multi-medication approach better, as with TB and HIV? HBV is only just beginning to deal with the potential role of different genotypes and the consequences of viral mutation, but there are rapidly becoming significant issues.
I Need a New Liver!
The issue of transplant is frequently discussed on the List and this session was organized by popular demand. The conference attendees who were post-transplant had been great sources of information and inspiration in the past. Drs. Cosme Manzarbeitia and Ken Rothstein led a very lively session. Unfortunately, the scarcity of organs in America means that the Exclusion Model operates, which is where potential candidates are screened out, not in. MELD criteria may have created hierarchy guidelines, but this does not begin to deal with the need.
More myths were challenged. For example, HBV does not always recur in the new liver, particularly in those who are e-antigen negative. And again, we learned experts can disagree even about post-transplant treatment protocols!
What was clear was that candidates for transplants should never take “No” for an answer and should be prepared to contact every center. Each center, although utilizing MELD, has its own idiosyncratic guidelines. Those co-infected with HCV or HIV may be candidates in one place and not at another. Each center has a list of medications candidates are “allowed” to be prescribed, a problem if medical care is obtained elsewhere!
A spirited discussion on donor procedures illustrated the many different points of view. For example, in Spain and some other countries there is no shortage of organs as availability is assumed, unless the deceased or his family has objected. In this country, we assume that organs will not be available unless advance directives have been made.
The Third Annual B-Informed Patient Conference was another huge success! A more diverse and hep-aware audience made for fascinating workshops and discussions. The speakers were excellent, encouraging active participation.
Although it would be nice to have easy answers and a simple, “one-size fits all” treatment plan, this is not the reality. We learned that experts do disagree, and that treatment approaches can differ greatly. Attendees noted areas of agreement and will continue to watch as other treatment issues evolve.
As B-Informed 2003 came to a close, attendees said good bye to each other, promising to be back next year. We are grateful to the Hepatitis B Foundation and to the co-host Hepatitis B Information and Support List (HB-L) for continuing to host this important event .