Since my first B Informed patient conference, I have a conversation with myself every summer:

I went last year – I don’t really need to go again. It’s extravagant because by now I go as much to see my friends as for the information and opportunity to ask questions. Well yes, but being able to talk face to face with people who have HBV is one of the reasons this conference happens, so that’s not extravagant – it’s important!

And so, I was on my way again, this time to Philadelphia where the Hepatitis B Foundation (HBF) was hosting its 7th annual patient conference. Within minutes of arriving, I was already making dinner plans with friends from previous conferences.

This year began with sessions tailored specifically to parents of kids with HBV – from medical basics to “who to tell.” Renowned pediatric hepatologist Dr. Maureen Jonas gave a talk that was one of the highlights. She reminded everyone that while most kids with HBV only need regular medical check-ups (every six months is recommended), some may have active liver disease, compelling their parents and doctors to make tough decisions about treatment.

I was struck by the intense desire of the parents to understand the complexities of this disease, hungry for knowledge to help their kids. They arrived with lab reports, medical articles, and many questions. If Dr. Jonas hadn’t needed to catch a flight, I think the parents would have kept her in the room for hours.

Over dinner we enjoyed talking with U.K. hepatologist Dr. Sharat Misra, who offered his perspective on treatment protocols, emphasizing the different approaches between the U.S. and other countries.

In the lively summer environment of downtown Philly, impromptu get-togethers gave opportunities to connect newcomers with experienced participants; and parents of kids connected with adults who live successfully with HBV. These informal exchanges make the conference truly special, building a strong gathering of friends.

On Saturday, keynote speaker Dr. Hie-Won Hann shared the inspiring story about her early HBV research and pioneering efforts to raise disease awareness among Asian Americans over the past 20 years. Her talk was a reminder that despite great medical progress, there is still a lot of work to be done in high-risk communities. As part of this effort, the Foundation hosted a special session led by HBF public health scientist Dr. Gang Chen for members of the Philadelphia Chinese community. Vouchers, funded by a grant from the HBF, were also distributed for free screening and vaccination at the Chinese Health and Information Center.

With his enthusiastic delivery and ability to simplify virology, HBF president Dr. Timothy Block explained how new drugs in the pipeline differ from approved treatments. He provided hope that there will be more than “me too” antiviral drugs in the future and made us feel grateful that the Foundation is devoted to the challenges of HBV.

For years, patients have been clamoring for nutrition guidelines at these conferences and Dr. Melissa Palmer delivered with her presentation. Within an hour, she plowed through 92 slides on nutrition, supplements and herbs. She specified quantities and doses, giving a solid base from which anyone could build a liver-healthy lifestyle. Yet, with so much information delivered so quickly, I had to ponder the difficulty of keeping current in an area like nutrition, which is a vast field with so many new developments. I wish there had been time to ask questions.

The much anticipated and highly popular “Ask the Experts” panel discussion – Dr. Hann, Dr. W. Thomas London, Dr. Sharat Misra, Dr. Palmer and Dr. Kenneth Rothstein – once again made the point that even among the most knowledgable hepatologists, there is little agreement about how best to treat HBV. While I always appreciate the willingness of these physicians to participate in this type of forum, it sometimes feels like they are debating each other rather than answering the patients’ questions.

Despite showing signs of information overload, most people picked up momentum for the afternoon workshop discussions on dating and personal relationships, complementary medicine, and parent issues led by HB-List “experts” – Steve Bingham, Sheree Martin, Michelle Kropp, Chris Kukka, Maureen Kamischke, Bambi Winkler and myself.

I expect that quite a few newcomers will be back next year for more answers. With this complex viral disease, the search for knowledge will naturally lead to more questions. Just as in past years, I board the plane home feeling good that I attended yet another “Gathering of Friends.”

Karin Koelle is a former speed skating champion and HBV advocate with an abiding interest in nutrition, exercise, and alternative medicine who lives in California.