Surfing the MASH Tsunami continues its 2023 wrap-up conversations with patients and patient advocates Mike Betel of the Fatty Liver Alliance (Canada) and Tony Villiotti of NASH kNOWledge (Pittsburgh, PA), along with co-hosts Jörn Schattenberg and Roger Green. The conversation focuses on viewing the year’s major events and upcoming priorities from a patient advocate’s point of view.
The conversation starts by looking at the roles that patient advocates in different countries have played in the global mix. The conversation starts by focusing on highlights and not-so-highlights of the year, with the first group including the return of face-to-face conferences with active patient involvement and education, the second group including the complete response letter for obeticholic acid and the new nomenclature seen as generally positive but somewhere in the middle.
The conversation’s first deep dive comes around the new nomenclature. Mike notes that this was an important initiative for every stakeholder in the MASLD/NAFLD community during the year. Tony describes himself as originally having been opposed because of all the re-work it will require for his organization and also because at a 1:1 level, it becomes hard to envision a physician explaining this disease to patients without raising the concept of “fat.” They start by discussing liquid tests, but Mike then shifts to VCTE and the idea that Canadian patients wait six months for VCTE, which is not tenable in the long-run. Mike discusses having gone to the Canadian parliament this past spring and that he learned how little members know about MASLD. He sees increased meetings and conversations, particularly with patients telling their own stories, as critical to building government support.
In response to a question from Roger, both Tony and Mike consider the new nomenclature background noise that will not meaningfully affect how patients and their providers communicate. Jörn notes that in German, he cannot discuss metabolic disease or steatosis because they will mean nothing to the patient, so he uses the term “fat liver,” which is the literal German translation.
The conversation shifts to the concept of “stigma”, with Jórn starting by noting that the phrase “fat liver” has little stigma. Tony and Jörn agree that framing the issue properly can overcome any perceived stigma on the part of patients. The group agrees that it will take time for stakeholders to adopt the nomenclature, but, as Mike says, “it’s here” and everyone will need to get used to it.
In response to a question from Roger, both Mike and Tony highlight increased use of and access to non-invasive testing (NITs) as a primary advocate goal for 2024. They also discuss gaining access to VCTE on a timely basis.
Roger asks what listeners should consider about working more effectively with patient advocate groups. Mike starts by asking that manufacturers and sponsors bring patients into the clinical trial design process far earlier. He also notes that patient advocate groups need financial support from all sources including manufacturers, to support education. Tony mentions the importance of working with children, going into schools to educate children, and, through them, to reach the parents.
Advocates’ hopes for 2024 start with the idea of resmetirom being approved. Mike looks to learn more about what primary care physicians in Canada are doing now and how he can motivate them to do more. Mike and Roger discuss strategies for working with industry. Tony mentions the importance of motivating patients to seek their own care. The last comments are around the availability of multi-lingual materials in the two countries.