November 06, 2022
2 minutes of reading
Cryer reports no relevant financial disclosures.
WASHINGTON — Funding liver disease research and reducing disparities in liver care requires investments commensurate with its prevalence and burden on the health care system, said a keynote speaker at The Liver Meeting.
“When I think about diversity, equity and inclusion, I think my life is a testament and a testament to when it all works out for us.” Donna R. Cryer, JD, founder and CEO of the Global Liver Institute and a 28-year liver transplant survivor, told attendees. “[I am testimony to] when we invite people who may look different, talk differently, who may embody leadership in a different form than we are used to, and make sure they have what it takes to be successful. My goal is to make sure every patient has the best chance for the same outcome.
She noted, however, that critical disparities remain between research funding and the burden of liver disease compared with other conditions and disparities among liver diseases — particularly among racial and ethnic groups with liver disease.
“When we think about the types of disparity, one example can be found simply by looking at the estimated NIH funding for 2022: $3 billion for HIV versus $644 million for all forms of hepatitis, even though the incidence of hepatitis is much higher -tall,” Cryer said.
Similarly, she noted that budgets for liver disease advocacy groups “are a fraction” of those of patient advocacy organizations such as the American Heart Association and the American Cancer Society.
“If you could put together all the patient advocacy organizations in the liver field, I don’t think we would be equal to the salary of the CEO of the American Heart Association,” Cryer said.
Funding for disease advocacy and research is critical to addressing widespread disparities in liver care, yet cirrhosis and chronic liver disease remain among the most underfunded diseases relative to the health care burden they represent; this is likely due to the enduring stigma that these diseases are associated with alcoholism, drug abuse and morbid obesity.
“We have to do better,” Cryer said. “If we want to have advocacy, then we have to invest in advocacy. If we want to have research in liver disease so that we can solve these problems and find treatments for hundreds of liver diseases that have no treatment or cure, then we need to invest in it – we need to invest in it at the prevalence level and the impact on the health care system.’
Cryer noted that inequities also exist in liver disease — “fairness is not one-size-fits-all” — as diseases demonstrate differences in genomics, differences in environment, differences in how diseases are triggered and progress.
“In pediatric liver disease, for example, most people don’t realize that 50 percent of all pediatric admissions related to liver disease occur in black children,” she said. “Similarly, we can look at NALFD and NASH and see the particular differences and propensities within our Hispanic and Latino populations.”
Similarly, although it is well known that hepatitis B disproportionately affects Asian Americans, there are notable barriers to recognizing these risks in the US, particularly around hepatitis B testing prior to the introduction of chemotherapy.
“We need to think about how to involve the community in shaping the field, in shaping the clinical research, in the questions that are asked, in the outreach to the community, and the kind of information that goes back to the community so that they can be full participants with understanding how their community is uniquely affected so they can help save themselves.