S5 – E02: MASLD Patient Advocates Plan MASH Activities For 2024

S5 - E02 - MASLD Patient Advocates Plan MASH Activities For 2024
Leading MASLD patient advocates Tony Villiotti of NASH kNOWledge, Wayne Eskridge of the Fatty Liver Foundation, Jeff McIntyre of the Global Liver Institute, and Milan Mishkevikj of the European Liver Patients Association join Louise Campbell and Roger Green to share their vision of changes in the MASH world in 2024 along with each organization's hopes, concerns and plans. The discussion covers the advocates' hopes and concerns for the year as well as the programs and efforts each considers top priority.

Co-hosts Louise Campbell and Roger Green sit with four leading MASLD patient advocates (Tony Villiotti of NASH kNOWledge, Wayne Eskridge of the Fatty Liver Foundation, Jeff McIntyre of the Global Liver Institute, and Milan Mishkevikj of the European Liver Patients Association) to discuss their plans and actions for MASH patients in 2024.

MASLD Patient Advocates

00:00:00 Surf’s Up: Season 5 Episode 2
Co-hosts Louise Campbell and Roger Green sit with four leading MASLD patient advocates (Tony Villiotti of NASH kNOWledge, Wayne Eskridge of the Fatty Liver Foundation, Jeff McIntyre of the Global Liver Institute, and Milan Mishkevikj of the European Liver Patients Association) to discuss their plans and actions for MASH patients in 2024.

00:04:09 Meet Milan Mishkovikj
North Macedonian patient advocate Mishkovikj, a key leader in the ELPA, discusses how he became involved in liver patient advocacy and shares one fact about himself that might surprise you.

00:11:25 Groundbreaker
Panelists each share one piece of good personal or professional news from the previous week.

00:15:52 Anticipating Pi Day
Every year, Pi Day is March 14. This year, that date has extra significance: it is the PDUFA Date for resmetirom approval at FDA. Advocates describe their “guarded optimism” regarding whether resmetirom will be approved.

Wayne notes the potential for confusion and disappointment because not every patient that anticipates receiving the new drug will actually do so.

Louise and Milan describe how a US approval might affect their respective countries and regions. Jeff describes the extensive planning GLI is doing to prepare for a PDUFA decision that might raise as many questions as it answers, particularly around coding, reimbursement and definition of appropriate patients. He also describes a possible approval path for countries outside the US.

00:26:42 Post-Approval Planning
As Jeff puts it, “We have to be planning for the second half while we’re playing the first half on this,” with important questions about the implications of labeling on the topics he mentioned earlier.

Roger asks what role patients might play in access decisions, to learn that the advocates have largely been “blocked out” of the process. GLI anticipates driving conversations with health systems around policies and access.

The other US advocates do not anticipate doing so. Milan describes how ELPA will work with EMA, the European Parliament and other relevant groups. Louise adds private insurers and governmental payers to the key targets for post-launch lobbying and discussion.

00:38:43 Where Does the Patient Fit?
Roger asks where patients fit in the decision paradigms and how that might change over time. Louise shares her view that while patients might consume the medications, the real customer is either the prescriber or payer. Tony describes payers as “the last frontier” in learning how patients feel. Jeff returns to a range of “here and now” access issues GLI can address now.

After MASLD Patient Advocates… Milan and Roger discuss perspectives on the interplay of regulators, payers, providers and patients.

00:49:13 Advocates’ Key Programs
Each advocate describes one key program they will run in 2024. Wayne describes FLF’s State of NASH Care in America survey. Tony describes NASH kNOWledge’s children education programs. Milan describes continuing pilot programs ELPA started in 2023 to education the European Parliament. Jeff discusses GLI’s Advanced Advocacy Academy, which “grew roots” around the world in 2023.

At different points earlier in the discussion, each advocate commended the support they get from GLI.

00:56:30 Closing Question
Roger asks what will tell each advocate whether they’ve been successful when they look back on 2024 12 months from the recording date. Answers are powerful and vary by organization.

01:02:55 Business Report
News on audience metrics, the upcoming Question of the Week, next week’s fatty liver disease nomenclature discussion and this week’s Vault conversation.

Sponsoring partnerships with SurfingMASH present a multifaceted avenue for companies seeking to amplify their brand presence and engage with targeted audiences.

Sponsoring Partnerships!

Sponsoring partnerships with SurfingMASH present a multifaceted avenue for companies seeking to amplify their brand presence and engage with targeted audiences.