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S2-E64.3 – The Growing Energy and Impact of NASH Patient Advocacy

Andrew Scott joins the Surfers to discuss the growing energy and impact of patient advocacy.

This conversation is part of SurfingNASH’s 2021 NAFLD Year-In-Review. Andrew Scott, Global Policy Lead for the Global Liver Institute joins Louise Campbell and Roger Green to discuss the growing energy and impact of NASH patient advocacy.

This episode focuses on the steps that have increased reach and effectiveness of NASH patient advocacy dramatically in 2021. Andrew starts by noting some of the pivotal steps this year through which patient advocates began or expanded collaborations with the medical community in 2021, and then describing the activities that resulted from these collaborations: Global Liver Institute’s (GLI) US NASH Action Plan, the range of guidelines and recommendations emerging from medical societies, the externally-led Patient-Focused Drug Development (PFDD) meeting with FDA, and a range of legislative initiatives in the US Congress and many states. Andrew notes that much of this activity emanated from decisions GLI took in 2017 to promote the importance of NASH in the constellation of liver diseases. Also, he notes the importance of discussing not only Fatty Liver disease but also the constellation of non-communicable metabolic conditions linked to it.
Today, GLI focuses on providing appropriate therapeutic options and support for every stage of NAFLD. Activities like the PFDD meeting focus on the need for drug development and approvals. Other activities, like GLI’s collaboration in building and promoting a nutrition app, focus on earlier stage disease and helping patients live healthier lives before they experience disease. The common theme is that all activities address the needs to educate stakeholders and develop products to support, diagnosis, treatment and management at every stage of disease progression.

The conversation shifts to the need to conceptualize Fatty Liver in a broader context. Louise notes the statement that the liver is a mirror on the metabolism, or perhaps the patient. Andrew states that GLI will increasingly focus on the idea that LIVER HEALTH IS PUBLIC HEALTH and on overall wellness.

This leads Roger to wonder why other patient advocacy organizations would like to silo their patients so that the focus is on an individual disease as compared to overall patient wellness. Andrew observes that this approach — focusing narrowly on a single disease and serving as advocate for patients with that disease — has been extremely effective for some patient advocacy groups such as breast cancer in terms of fund raising and public clout. However, Andrew notes that while it has worked for a siloed disease focus in the past, we are coming to a place in society where we need to view many of these issues in a more integrated way.

Louise observes from her own experiences in the UK is that organizations competing for funds will not collaborate if they foresee an economic or PR downside. Andrew acknowledges that possibility. However, he reports that GLI has had some success by collaborating with community liver groups to help them raise more money. When this succeeds, it engenders good will and strengthens bonds within the community.

Roger shifts the conversation in the direction of metrics. He notes the old axiom that “people do whats inspected, not what’s expected” to point out that we do not yet have a concise, widely used and accepted test or metric that describes how successful we are in slowing or stopping the growth in NASH. Andrew agrees and notes this is a particular challenge on Capitol Hill, where legislators are looking for hard numbers to demonstrate the need for (and later success of) programs. The GLI-supported NASH Care Act, which was initially entered in 2021 and will be re-entered and hopefully passed this year, creates a Task Force charged with determining what the national metric(s) should be.

The next phase of this conversation addressed broader issues around the liver as part of a holistic health system as compared to a discrete organ with unrelated issues. Andrew’s key points: (i) GLI recognizes that within the constellation of needs, beliefs and knowledge levels at which it operates, there is no “one size fits all” approach that will work and (ii) GLI is finding effective strategies for working more closely with government regulators. Its next challenge will be to get a vote on the NASH Care Act sometime this year.

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