‘We have to do better’: Liver health equity demands research investment to match burden
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WASHINGTON — Funding research into liver disease, and reducing inequities in liver care, requires investment proportionate to 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 that my life is a testament and a testimony to when we get it all right,” 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 differently, speak differently, who may embody leadership in a different form than we are used to, and make sure that they have everything that they need to be successful. My purpose is to make sure that every patient has the best chance at that same outcome.”
She noted, however, that there remain critical disparities between research funding and the burden of liver diseases compared with other conditions and disparities between liver diseases — especially among racial and ethnic groups with liver diseases.
“When we think about types of inequities, one example can be found simply by looking at the NIH estimated 2022 funding: $3 billion for HIV vs. $644 million for all forms of hepatitis, despite the prevalence rates of hepatitis being much higher,” Cryer said.
Similarly, she noted that budgets for liver disease advocacy groups “are a fraction” of those of patient advocacy organizations like the American Heart Association and the American Cancer Society.
“If you could roll up all of the patient advocacy organizations in the liver space, I don’t think we would be equal to the CEO salary of the American Heart Association,” Cryer said.
Funding for advocacy and disease research is critical to addressing widespread disparities in liver care, yet cirrhosis and chronic liver disease remain a few of the most underfunded diseases compared with the health care burden they represent; this is likely due to 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 need to invest in advocacy. If we want to have research in liver disease, to be able to solve these problems and to find treatments for the hundreds of liver diseases that lack treatments or cures, then we have to invest in it — we have to invest in it at the level of prevalence and the impact on the health care system.”
Cryer noted that iniquities also exist within liver diseases — “equity is not a one size fits all” — with diseases demonstrating differences in genomics, differences in environments, differences in how the diseases are triggered and progress.
“In pediatric liver disease, for instance, most people don’t realize that 50% of all pediatric liver disease-associated admissions occur with Black children,” she said. “Similarly, we can look at NALFD and NASH and see the particular disparities and propensities within our Hispanic and Latino populations.”
Likewise, although hepatitis B is well-known to disproportionately affect Asian Americans, there have been notable obstacles in recognizing these risks in the U.S., especially around testing for hepatitis B prior to induction of chemotherapy.
“We should be thinking about how do we involve the community in the shaping of the field, in the shaping of clinical research, in the questions that are asked, in the outreach to the community, as well as the type of information that is returned to the community so they can be full participants with an understanding of how their community is uniquely impacted so they can help save themselves.”
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Cryer DR. Patient keynote address: Diversity, equity, and inclusion in the liver patient community. Presented at: The Liver Meeting; Nov. 4-8, 2022; Washington (hybrid).
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