S5 – E22.6 – FROM THE VAULT: Patient Advocates Reflect On How The “System” Views MASH

S5 - E22.6 - FROM THE VAULT: Patient Advocates Reflect On How The "System" Views MASH
In a conversation from May, 2023, patient advocates patient advocates Mike Betel, Tony Villiotti and Wayne Eskridge joined co-hosts Louise Campbell and Roger Green to share reactions to the Public Comments session of ICER's report on MASH drugs obeticholic acid and resmetirom.

In this week’s episode, Jeff Lazarus discusses the idea that the MASH community, including patient advocates, live in a “bit of a bubble,” where the clinicians with whom they interact are part of the MASH community. Last year’s ICER Public Comments session exposed them to an FDA Advisory Board of hepatologists…and it was a very different experience. Last year’s conversation notes reveal what happened and the advocates’ reactions.

In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingNASHrevisits the topic after a public comments session took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.

Roger begins by asking the group how the word empathy fits into this discussion. Tony shares that he was upset by the majority viewpoint of 15 featured voting members on a number of different issues. For example, 40% of these voting members suggested that a drug approval would have no impact on a caregiver’s life. Tony asserts the importance behind people needing to be aware of the impact of NAFLD/NASH not only on the patient, but also the families and those close to them. Speaking from personal experience, Wayne shares that he was perplexed on the document’s position that NAFLD/NASH is not considered to be a progressive disease. This leads Louise and Roger to insert comments around the pricing and economic analysis surrounding the discussion. As the conversation winds down, Mike returns to the conundrum of the voting results. Listen on to hear why his reaction was, “I literally fell out of my chair.”

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