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NASH Patients Are Entitled to a 'Bill of Rights'

— Advocacy group encourages a "partnership" between clinicians and patients

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Patients with non-alcoholic steatohepatitis (NASH) have the right to expect certain multidisciplinary treatments that clinicians should be aware of, a patient advocacy group said.

Warren Hall, MDiv, of the nonprofit American Liver Foundation, unveiled this dressed as , complete with a jacket, white wig, and tri-corner hat in a talk at the virtual American Association for the Study of Liver Diseases annual meeting.

Keeping in character, he read out these rights on a scroll, which included that patients:

  • Receive the best care and treatment possible
  • Take as much time as necessary with your healthcare team
  • Ask your doctor for a specialist referral or second opinion
  • Partner with your doctor to create a multidisciplinary team
  • Expect ongoing coordination of your care

These rights, among others, were the result of a NASH roundtable last September, which consisted of patients, providers, and endocrinologists.

Hall shared an anecdote about a patient who said they got more information from their patient support group on Facebook than from their own physician. He also discussed the stigma associated with liver disease -- particularly the assumption that anyone with the disease drinks too much alcohol.

"People will say 'I have fatty liver, but not from alcohol. I have NASH, but I never drank,'" Hall said.

He encouraged the clinicians in attendance to think of the provider-patient relationship as a "partnership."

"People have this idea that 'I have to go with what my doctor says, I don't want to go against my doctor, my doctor might not give me the help I need, my doctor might be annoyed at me,'" Hall noted.

However, he added that when their group speaks with doctors' organizations, they find that clinicians do want patient input.

In terms of specialized care, Hall advocated for a dietitian to be included on a NASH patient's care team, as dietitians can provide more specialized care than a primary care physician or even a gastroenterologist.

"Those are equally important as other members of the healthcare team," he said. "Consulting with a certified dietitian, someone who can provide a plan for you, is extremely important. Good nutrition can slow or even stop some diseases."

Hall also stressed the importance of an exercise component to the plan, as burning off more calories than a person takes in is the only way to lose weight.

Other rights listed included the right to request non-invasive tests as part of NASH diagnosis and management, the right to know your triglyceride and cholesterol levels, and the right to ensure your doctor provides your caregiver with specific treatment information.

Of course, if patients don't get information from their doctor, they will find it online, and as Hall quipped, "my good friend George Washington said be careful of what you read on the Internet."

He encouraged clinicians to steer patients in the direction of sites with .gov or .org extensions, as, "where you do research is extremely important."

Clinicians in the audience were supportive of the bill of rights, with one clinician suggesting it should be put in the electronic MyChart messaging center, so patients could view it and have access.

"It tells clinicians what to do without telling clinicians what to do," the participant said.

Hall pointed out that the document itself is constantly evolving, as new studies are being done and more information is being gathered from clinical trials specific to people with NASH.

"The feedback we get is going to help this very important discussion continue," he said. "This isn't the end of it; this is the beginning of moving in a direction that we know is so important."

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    Molly Walker is deputy managing editor and covers infectious diseases for 鶹ý. She is a 2020 J2 Achievement Award winner for her COVID-19 coverage.

Primary Source

American Association for the Study of Liver Diseases

American Liver Foundation, "NASH Patient's Bill of Rights" AASLD 2021; Presented November 12, 2021 at 11-11:50 am.