PBC Advocate

I had the privilege of attending AASLD’s 2017 Liver Meeting® which is the largest conference for liver specialists in the US. I attended this conference as a member of PBCers Organization (the largest US based support group) as an exhibitor, along with several others from this organization. It was a fruitful event as we were able to reach many clinicians and researchers to talk about our recent name change from Primary Biliary Cirrhosis to Primary Biliary Cholangitis while maintaining the initials PBC. We also highlighted the need for patient support throughout their journey with PBC. Support for a newly diagnosed PBC patient is very different than one at Stage 4 with cirrhosis.
The last day of this three-day liver meeting was a full day and yet it was the best day for deeper conversations and exploring possible collaborations. We had less visitors but more meaningful time with those we had. We got some great feedback about unmet needs (see below for suggested action items).
While at the exhibitor hall booth, I had a chance to talk at length with Dr. Pietro Invernizzi. He is the doctor that was included on the letter for the name change (I got his autograph on my copy of the letter which seemed to tickle him). While talking with him our booth, he lamented that there are no support groups in Italy for patients. Dr. Invernizzi was most engaging and interested in collaboration about a support network for their patient community. He emailed the same day and introduced me to the Autoimmune Liver Disease (Associazione Malattie Autoimmuni Fegato – AMAF) organization president to whom I have already reached out to in hopes of getting this ball rolling quickly. Germany and France also has a need for more local groups due to transportation, cultural and geographical challenges. The same is true in Asia with China, Japan, Korea, Vietnam, India and Pakistan attendees expressing the same concerns.

This same situation exists in Mexico and I talked with a patient practitioner who sees a very real need for better support services, particularly in the Hispanic language community. One size does not meet all and what works for one group may not work for another. Culture, language and geography aside, each group must identify themselves and work for their patient community.

Lastly, I attended the Pinnacle Award ceremony for Weici Zhang, PhD under Dr. Gershwin (one of 6 Pinnacle Award recipients for 2017). The Pinnacle Award is a three-year award ($100,000 per year), the largest award that AASLD bestows, and is solely given to researchers working to improve the lives of liver disease patients. She is so humble and excited to be working with Dr. Gershwin at UC Davis in California and the team on a cure for PBC!

But what I learned was simple: there are a significant list or “unmet needs” in the PBC community. It was a large topic of conversation from many aspects and with many people. Some suggestions I heard (in no particular order and certainly not an exhaustive list):

• A venue for family, spouse and colleagues to learn and support someone with PBC is needed. Family takes a hit when someone is diagnosed and there are no good support mechanisms currently
• Men in PBC are underserved. How can we create a space that men can share and learn about PBC from their perspective?
• Should we work to educate about MELD and Child-Pugh scores? Benefits and risks?
• What things can we achieve collaboratively with PBC and liver health organizations?
• What other things can we collaborate to meet/solve in a larger group such as the PBC Collaborative that begun last year with a pharma, clinicians, researchers and patient groups?
• How can we better support the Hispanic community of PBC patients? Can we produce some materials in Spanish? Hold webinars or Spanish speaking session(s) at the Conference?
• What can we do as a premier patient group for PBC patients to improve support and advocacy efforts?
• How can we team up with local or regional groups in other countries to help them establish themselves as a support program?
• What can we do to help the non-diagnosed/just diagnosed patient to get up to speed quickly?
• Sessions at the national conference to deep dive into specific topics (e.g. autoimmune diseases, symptoms, family issues).
• How can we help educate other medical disciplines about the name change and disease?

This list seems a bit daunting, but it is also achievable. There are dedicated people in our PBC patient community that work every day to further the goals of those of us with PBC. This is true in more than just the US. Patient groups around the world struggle with the same challenges and yet, to date, there has not been a concerted effort to bring them all to the table and discuss collaborative initiatives to achieve some or all of the unmet needs items listed above. Challenges include:

• How could we do this?
• Who would pay for such an endeavor?
• How would these unmet needs be prioritized?
• How could we avoid duplicative efforts?
• Who should take on these roles within the PBC community?
• What role do patient groups have in this discussion?
• Should outside resources be used? If so, which and how do we pay for such resources?
• How do we handle the logistics of a multinational group of patient groups meeting?
• How do we address language barriers?
• How do we get consensus around the approach for any goal when different countries, cultures and languages are involved and don’t always agree with others?

I am a believer that any problem can be solved with the right approach. Root cause analysis is a tool I have often used in defining a problem in order to reach resolution. Negotiation and commitment to a common outcome are also required. The last 12 years or so of my career was a Supply Chain Management professional. In this role I often faced many of these same challenges in getting products manufactured and to end use customers in a timely, cost effective and quality driven market. I have negotiated multi-million dollar contracts for Fortune 100 companies’ products with suppliers and logistic companies around the world. It is simply a matter of listening, applying knowledge and skill, and tracking the end result to realize success. The same is true in the unmet needs for PBC community members. We need to bring resources to bear, come up with a plan and work towards resolution.

Do we have the ability to do it?

Yes. Granted, it is not easy, especially at the beginning. PBC also brings an additional challenge in that many of us with PBC also suffer with fatigue which can rob us of the ability to function at the level we used to or wish to now. But as with any challenge, there are solutions.
This can be done. This needs to be done. Today I take the first step in this endeavor as a PBC patient and advocate to address unmet needs of our PBC community. Stay tuned for periodic updates.