I am really glad that I went to the Hepatitis B Foundation’s Sixth Annual B Informed Patient Conference this past June 10-11, held at the Asian Liver Center in Stanford, CA. As a person who suffers from HCV, I thought I could share my insights since I’m used to the language that the hepatitis community uses: complaints about fatigue, brain fog, worries about disability issues, treatment side effects, depression (both from hepatitis and from treatment), end stage liver disease and its complications.

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 most patients were unknowingly infected at birth. Another representative group consisted of mothers of adopted Asian hepatitis B-positive children.

One thing I kept hearing about over and over again was liver cancer; apparently one of the major differences with HepC is that in HepB, 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 even younger] can get liver cancer. And the scary part is that there is NO warning. 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 and this 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 since it’s classified 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. The talk instead mostly focused on viral resistance to these treatments. Apparently side effects are not a major issue with the current antiviral hepatitis B medications, compared to interferon. Resistance is the problem.

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 the prevention, management and treatment of hepatitis B or C.

As well, while 5-year survival rates for some cancers are in the 80th percentile, certain illnesses still receive much more funding from governments than does HepB, where the 5-year liver cancer survival rate is well below 10 percent.

It was also a treat for me to see so many liver specialists with a strong voice for advocacy. Drs. Sam So, Tim Block, Eddie Cheung, Mindie Nguyen, and Phil Rosenthal participated in an excellent open panel discussion, taking

For both HCV and HBV, liver cancer looms large on the horizon; yet, there is little funding for research at present. The National Viral Hepatitis Roundtable (NVHR) released the first-ever national strategic plan to eliminate viral hepatitis in the U.S. to coincide with May’s Hepatitis Awareness Month, and the first-ever hepatitis B legislation, National Hepatitis B Act (H.R.4550 and S.3558), was introduced in Congress with a call to increase federal research to improve prevention and treatment options.

I urge people in the hepatitis C community to support the endeavors from the hepatitis B community [and the foundation]. The more we all work together the quicker we will be able to prevent, manage and treat hepatitis and its complications.

For a complete summary of the HBF’s B Informed Patient Conference and to view the speaker’s slide sets, visit our website at www.hepb.org.

FAST FACT

About the Patient Conference

60% of attendees came primarily to learn more about HBV treatments, whereas 40% wanted to meet others living with hepatitis B.