NASH or MASH? Name changes to established condition stir up confusion in liver disease community

It’s a literal mish-MASH of medical terminology as a global group of liver disease societies voted last month to change the name of NASH (nonalcoholic steatohepatitis) to MASH (metabolic dysfunction-associated steatohepatitis).

So far, the new names have gained little traction.

Verywell Health, a health news and information source, has updated its health directory with the new nomenclature, but competitors WebMD and MayoClinic.org have not. Organizations with NASH in their titles — such as the Global Liver Institute’s NASH Council and Genfit’s NASH Education Program — haven’t mentioned any upcoming changes. (Neither group responded to requests for comment.)

Even the FDA is still discussing what to do.

“The FDA is in the process of evaluating the changes to the nomenclature for non-alcoholic steatohepatitis (NASH) that were adopted by several large international societies earlier this summer,” an FDA spokesperson said in an email to Endpoints News. “The agency is also studying the spectrum of nomenclature changes under the new umbrella heading ‘steatotic liver disease.’”

The rationale for the name change is to move away from using stigmatizing language like “fatty liver” and “nonalcoholic,” yet the timing of the change has frustrated patient groups and some medical organizations who describe the name change as confusing. Even Madrigal Pharmaceuticals, which is developing the furthest-along NASH treatment, doesn’t have plans at this time to use the term “MASH.”

Wayne Eskridge

“It’s a very unfortunate step at such a critical time for our research pipelines and patient education,” said Wayne Eskridge, founder and CEO of the Fatty Liver Foundation. “It creates real confusion for the patient community at a time when we’ve spent endless amounts of effort to educate people. If we already had therapies to use, I’d be less pessimistic about it. But we’re at this very delicate place where we almost have therapy and people will pay more attention to it.”

There are currently no FDA-approved NASH treatments, but a handful of candidates are in Phase III studies, including Madrigal’s resmetirom, which recently turned in its rolling submission NDA to the FDA.

A Madrigal spokesperson said it “appreciates the efforts of the medical societies, patient advocacy groups and hepatology experts who participated in the nomenclature consensus process,” adding that the name change is just that and it will not change its submission.

However, the spokesperson added, “When the regulators recognize the name ‘MASH’ as the new name for NASH to which regulations and approvals apply, Madrigal will also transition to use of treatment of MASH with liver fibrosis as the indication for resmetirom.”

The new naming conventions address several related diseases. The more common NAFLD (nonalcoholic fatty liver disease) is changing to MASLD (metabolic dysfunction-associated steatotic liver disease). And the new umbrella term, as the FDA noted, for related diseases is steatotic liver disease (SLD).

The medical groups that initiated the change, including the American Association for the Study of Liver Diseases (AASLD), began soliciting input in 2021 in a process that ended in the nomenclature adoption during a unanimous vote in June. The effort has generally been appreciated by the liver disease community, but that still isn’t preventing many from taking a wait-and-see or slow-roll approach.

The British Liver Trust, which was not a part of the process, said it will continue to use the existing terminology for now, along with the new terms “where appropriate.” Vanessa Hebditch, its director of communications and policy, explained the organization understands and appreciates the new names, but it’s concerned about the confusion the changes may cause for patients — as well as the fact that there seems to be “no clear implementation plan.”

“Changing the name of a condition is akin to changing the name or branding of a company, and we risk losing the valuable recognition and awareness that we have built up,” Hebditch said.

She added that the new terms “are medical jargon and largely consist of words most people are unfamiliar with and will have difficulty remembering or pronouncing so the new names need to be brought in slowly in parallel with existing terminology.”

The complexity and challenge of the name change isn’t completely lost on AASLD.

Norah Terrault

“We know that change can be a challenge,” Norah Terrault, the group’s president, said in a video about the changes.

The group is currently working with “key stakeholders” to help develop its rollout strategy. The plan will be presented next month to the AASLD governing board, a spokesperson said. It plans to introduce the plans to the broader global community at the Liver Meeting in November.

Meanwhile, AASLD is “developing clinical resource tools, like an SLD decision tree, infographics, and presentations to help those in our community better understand the new nomenclature and how to use it. Most importantly, we need to work toward implementation as a community to ensure all needs are met and voices are heard,” the spokesperson said via email.

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