Surfing the MASH Tsunami

S6.14.3 - Louise and Roger React to Empowered SLD Patient Advocates


Listen Later

Send us a text

The original roundtable has three segments. Surfing the MASH Tsunami is preempting the third segment, which will be posted next week, to share our co-hosts' reactions to the positivity and energy they felt from a group of empowered SLD advocates. 

Immediately after the roundtable, Louise suggested to Roger that they record a separate conversation sharing their reactions to what they had just witnessed. They turned the recording equipment on and resumed their conversation.

Roger starts by noting that this is the first SurfingMASH episode comprised entirely of patient advocates at a moment when advocates felt empowered and optimistic. (Also, the Fellows were the first advocates to appear on SurfingMASH who are not part of the Advocate KOL community.)

For Louise, her overpowering reaction is to the passion, because passion breeds energy and empowerment. She notes that the SLD advocates came from an array of liver-related backgrounds and from HIV, the original sources of truly empowered patients some 30 years ago. 

Roger shares two thoughts. As he listened to the roundtable, he recalled earlier episodes, some four to five years ago, when it seemed that the physician KOL community was not in sync with the patient advocates' goals and needs. Continuing along this train of thought, he discusses the shift in identity from “MASH patient” to “person living with MASH.” To Roger, the term "MASH patient" suggests a person defined by the disease, whereas the term "patient living with MASH" empowers individual patients to manage the disease and its place in their lives in whatever way they choose. The advocates, he says, choose to learn and speak out confidently. 

During the roundtable, Elena mentioned Úna Keightly, a Harrison Fellow from Ireland, who spoke from the floor at Paris MASH to request that patients learn about the outcomes of the trials in which they participate, whether the outcome is deemed a success or a failure. For the "MASH patient," a failed trial feels like a personal failure, but for a "person living the MASH," even the failed trial becomes an opportunity to learn about the disease and contribute to a long-term solution. 

Louise mentions a comment from Harrison Fellow Pam Miller about her cardiologist giving her a potentially hepatotoxic medication without considering Pam's liver status. This reminded both Louise and Roger of a comment former Global Liver Institute President Donna Cryer made years ago to the effect of "it doesn't matter what kills me. If I'm dead, I'm dead." 

From here, the conversation shifts to other changes in disease description Louise and Roger foresee:

  • Describing the disease itself in more accessible terms, such as "liver stiffness" vs. "fibrosis level."
  • Increasing the groups of attendees at events to include not only patients, but also the APPs who will provide much of the actual patient-level care.
  • Educating those who still mischaracterize MASLD as “a bit of fat” that requires no action. 
  • Focusing more attention on post-menopausal women, who Louise notes are most likely to exhibit advanced SLD and cirrhosis. 
  • Being more sensitive to issues that drive changes in patients' quality of life, which might be the impact of hepatic encephalopathy, but might also relate to lean mass wasting with incretin agonists. 

Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care. They cite some specific examples from the Fellows in the roundtable and others from their own life experiences.

Ultimately, Louise and Roger share their belief that this program is an excellent tribute to Stephen Harrison, who strongly believed in the importance of patient advocates and the messages they convey. 

...more
View all episodesView all episodes
Download on the App Store

Surfing the MASH TsunamiBy SurfingNASH.com

  • 3.9
  • 3.9
  • 3.9
  • 3.9
  • 3.9

3.9

24 ratings


More shows like Surfing the MASH Tsunami

View all
Freakonomics Radio by Freakonomics Radio + Stitcher

Freakonomics Radio

32,101 Listeners

Planet Money by NPR

Planet Money

30,693 Listeners

Pivot by New York Magazine

Pivot

9,581 Listeners

Diabetes Core Update by American Diabetes Association

Diabetes Core Update

101 Listeners

The School of Greatness by Lewis Howes

The School of Greatness

21,183 Listeners

The Curbsiders Internal Medicine Podcast by The Curbsiders Internal Medicine Podcast

The Curbsiders Internal Medicine Podcast

3,363 Listeners

The Daily by The New York Times

The Daily

112,880 Listeners

Up First from NPR by NPR

Up First from NPR

56,546 Listeners

The Indicator from Planet Money by NPR

The Indicator from Planet Money

9,533 Listeners

The Peter Attia Drive by Peter Attia, MD

The Peter Attia Drive

9,193 Listeners

All-In with Chamath, Jason, Sacks & Friedberg by All-In Podcast, LLC

All-In with Chamath, Jason, Sacks & Friedberg

9,957 Listeners

Consider This from NPR by NPR

Consider This from NPR

6,401 Listeners

EASL Podcasts by European Association for the Study of the Liver

EASL Podcasts

0 Listeners

Docs Who Lift by Docs Who Lift

Docs Who Lift

395 Listeners

The Headlines by The New York Times

The Headlines

617 Listeners