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By C.D. Mazoff, Phd
Managing Editor, Webmaster
A few weeks ago I received a surprise invitation from Steve Bingham to attend the Hepatitis B Foundation’s Sixth Annual B Informed Patient Conference in Palo Alto, CA. Steve, as some of you may know, is the co-owner of the Hepatitis B Information and Support List, the only hepatitis B online support group, where I post news and updates from both the HCV and the HBV Advocate websites.
I am really glad that I went because as a person who suffers from HCV I thought I was in a good position to be able to share my insights with others who have hepatitis C or who wanted to know more about what these two viruses have in common or how they differ.
As a person with HCV who is actively involved in the hepatitis C community, I am used to the language that this community uses: complaints about fatigue, brain fog, worries about disability issues, treatment side effects, depression (both from HCV and from treatment), cirrhosis, end stage liver disease and its complications, extrahepatic manifestations (lichen planus, sjögren’s syndrome, fibromyalgia, and others), stigma, sexual transmission, and IDU. I probably left something out of this list, so don’t worry if you can’t find it.
Also when I talk with the HepC community at large, most are older 20’s and up but many are also in early middle age, which is no surprise given how long it takes for hepatitis C to present symptoms, and the demographics are pretty much a cross-section of the North American population.
Well, this is what I sort-of-like expected when I went to the HepB conference, but guess again! The first thing I noticed was that the group was predominantly but not totally Asian. This is because hepatitis B is endemic to Asia and the Pacific Islands. Many were born infected from birth but didn’t know it. Another representative group consisted of mothers of adopted Asian or Pacific Islander hepatitis B positive children.
The other thing I kept hearing about over and over again was liver cancer; apparently one of the major differences between HepB and HepC is that in HepB, HCC (liver cancer) can occur in the absence of cirrhosis or significant liver disease. In fact it was pointed out that HBV positive children as young as 8 or 12 can get HCC. And the scary part is that there is NO warning.
Over and over again the panel of physicians at the conference emphasized how important it was to be screened every 6 months for liver cancer if you have hepB. The screening (especially if you also have a high viral load and high enzyme levels) should include both an AFP test and an ultrasound.
Another thing I learned is that the stigma is different with HepB. In the HepC community, the fear is that one will be labeled a drug addict; but with HepB, the stigma is about sex. Hepatitis B is classed as a sexually transmitted disease. The stigma can be unbearable, and especially in the Asian community can lead to shunning and ostracism.
Also absent from the conference was the overwhelming talk of interferon and its side-effects. Intron A (standard interferon) was the first approved treatment for hepatitis B. Recently, Pegasys (pegylated interferon) was approved for the treatment of hepatitis B in adults, but most of the people at the conference were on lamivudine, adefovir or entecavir. Other new drugs, currently used to treat HIV, are on the horizon for hepatitis B. (See the HCSP Factsheet, What's New in Hepatitis B Treatment, by Christine Kukka) The talk instead mostly focused on viral resistance to these treatments. There were some people who had taken Peg, or who were thinking of trying it and who were worried about sides, but mostly it was about developing viral resistance to the direct antivirals they were taking and where to go from there. Apparently side effects are not a major issue with the direct antiviral hepatitis B medications, compared to interferon. Resistance is the problem.
Like HepC, HepB has different genotypes, some of which respond differently to different treatment regimens, but here the similarity ends. It is much too complicated to explain here, so I suggest that you check out the HBV Factsheets which will explain the situation better than I ever could.
The latest new drug on the block, entecavir, seems to be much more effective than previous hepatitis B drugs; but it’s still too early to tell. Usually viral resistance happens within the first 5 years, and there are no 5 year studies on entecavir since it was only approved in 2005.
Last, the big issue for HBV, as it is with HCV, is community awareness, and funding for research. For some reason, although many more people die from HepB than from bird flu, for example, there is already much much more money allocated to bird flu prevention than for prevention, management and treatment of hepatitis B or C. As well, while 5 year survival rates for some cancers are in the 80 percentile, certain illnesses still receive much more funding from governments than does hepatitis B, where the 5 year liver cancer survival rate is well below 10 percent.
It was a treat for me to see so many liver specialists with a strong voice for advocacy. Dr. Sam So, Dr. Tim Block, Dr. Eddie Cheung, Dr. Mindie Nguyen, and Dr. Philip Rosenthal participated in an excellent open panel discussion, taking all questions to heart and really voicing community support.
For both hepatitis C and hepatitis B, liver cancer looms large on the horizon; yet there is little funding for research on HCC at present. The newly formed National Viral Hepatitis Roundtable (NVHR), released the first-ever national strategic plan to eliminate viral hepatitis in the United States – Eliminating Hepatitis: A Call to Action http://nvhr.com/calltoaction.htm ) – to coincide with May Hepatitis Awareness Month, and the first-ever hepatitis B legislation HR 4550 National Hepatitis B Act (http://hepb.org/pdf/Hepatitis_B_Bill_HR
_%204550.pdf) was introduced in Congress and calls for support to screen and immunize more Americans, and to increase federal research to improve prevention and treatment options.
I urge people in the hepatitis C community to support these endeavors from the hepatitis B community. The more we all work together the quicker we will be able to prevent, manage and treat hepatitis and its complications.
Copyright, (June, 2006) Hepatitis C Support Project / HCV Advocate www.hcvadvocate.org. All Rights Reserved. Reprint is granted and encouraged with credit to the Hepatitis C Support Project
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