Latest news on PBC ADVOCATE activities in 2018:
With 2018 nearly over, it seems like a good time to recap some of the highlights of advocacy activities in 2018. Many exciting events and opportunities to advocate for PBC patients happened this year. As we continue to build our network, and develop new connections through that network, we continue to expand our impact with key leaders in research, policy and influencers. With a drive focused on education about PBC, and what it means to live well with PBC, advocacy achievements in patient-centric care and research often happen during one on one meetings.
The goal for 2018 has been to highlight that we are people first, patients second, and never defined by PBC. We are individuals with our own medical needs and we cannot be thrown into the bucket with everyone else because we’re all different, just with the same disease.
Below are some of the 2018 advocacy highlights.
January saw me in San Diego for an American Liver Foundation and PBCers Organization collaboration “Ask The Experts” event.
This evening presentation featured two physicians who talked about the clinical experience of having PBC and myself for a patient’s perspective. One attendee stated “I’ve learned more here in 2 hours than I’ve known in the 12+years since I was diagnosed with PBC”. A link to this video is available at Ask The Experts . This event also served to connect members of the PBC community with one another to grow a local support network.
I also collaborated with the UC Davis research team and clinicians for a joint PBC/PSC Meeting where Dr. Christopher Bowlus shared the latest information from various clinical trials in both autoimmune liver diseases. Attendees were also given the opportunity to provide blood samples for ongoing research under Dr. Eric Gershwin’s lab at UC Davis. Dr. Bowlus’ Slide Presentation.
In March, I was invited as a panelist at the Roth Investments 30th Annual
event to give a patient’s perspective on what it is like to have PBC and the daily challenges it brings. Other panelists included executives from three pharmaceutical companies to talk about their ongoing drug development, two physicians with expertise in PBC and a member of the team from the American Liver Foundation to talk about liver health and research.
May 2018 was the 13th PBCers Conference in Houston, Texas. As a co-chair for the conference planning committee, I spent many long hours fretting over many details including recruiting sponsors and speakers, all of which resulted in a fantastic
conference. Speakers included world renown medical experts in PBC, representatives from essentially all the pharmaceutical companies in development of therapies for PBC and industry experts to discuss treatments and clinical trials.
PBCers also launched the PBC PUZZLE program to raise awareness about PBC through the use of a creative and innovative approach, allowing participants to express how they are a each a piece of the PBC Puzzle. Two videos are available about this project at Puzzle Video 1 and Puzzle Video 2
I am a piece of the #PBCPuzzle
Also, due to the generous support of many sponsors, the PBCers Organization was able to provide travel scholarships for more than 30 attendees, as well as donating all registration and fundraising auction funds to research. All of the speakers presentations were video taped and are available at Conference Videos Photos from the Conference are posted on the http://www.PBCers.Org website as well as the PBCers Events Facebook page Conference Photos.
In August, I was honored to be selected for the second year in a row as a member of the judging panel for the 2018 Practice to Policy ®Practice to Policy ® grant program sponsored by Intercept Pharmaceuticals. This important grant program is for PBC focused programs to increase education and resources to to PBC community. Grant recipients were announced in September.
September is PBC Awareness Month and this year’s theme was the PBC Puzzle. The puzzle pieces created during the May Conference as well as those made afterwards, were featured in social media.
September 9th was International PBC Awareness Day and was focused on how all PBC patients around the world come together, individually and through various patient groups to raise awareness about PBC. September is also the major fundraising period and this year we had many decimated PBC patients and friends and family members helping to raise funds for research.
Also, in recognition of international PBC Awareness Day, I was invited as a panelist for a Facebook Live event on September 4th.
Other panelists were a physician who is also a patient (Dr. Jennifer Pate) , another PBC patient (Leslie Strata) and our Moderator who is a Nurse Practioner (Ann Moore) who sees PBC patients regularly in her practice. The Facebook Live event was well attended during the live broadcast and the video had 117,000+ views.
On the 12th of September, I was invited to CymaBay Therapeutics to speak with the entire company’s staff about PBC from a patient’s perspective, as well as how patients groups such as PBCers are involved in clinical trials and patient education. This was a fantastic opportunity to talk with members of the team working on developing a therapy for PBC, known as seladelpar. Early engagement with patient groups is critical in drug development, providing key meaningful input on treatment outcomes and objectives.
October was a busy month. As a recepient of two 2018 Practice to Policy® grants to the PBCers Organization, work has begun on the two projects that were submitted and funded. More details on these projects will be shared very soon.
November brings the 2018 Liver Meeting®. This event is an educational program for Gastroenterologists and Hepatologists and features research and clinical sessions. PBCers is an exhibitor at this event to raise awareness about PBC specifically, patient resources and education materials. This year the focus is on the new ICD-11 code which changes the name of PBC from Primary Biliary Cirrhosis to Primary Biliary Cholangitis. This is the last step in the official name change process and allows all doctors, medical facilities and insurance providers to bill and pay for services under this new standard code. This new code will be fully integrated in the U. S. by 2021.
Plans for December include strategic planning for 2019, working on the two Practice to Policy ® grant programs, and various housekeeping activities to finalize updates on some policies for PBCers.
As always, the time flies by. 2018 has been a very busy year, and I’m sure 2019 will be busy as well. I’m looking forward to a new year, full of opportunities to continue advocacy for the PBC community.
All the best,
PBC Advocate and Patient