Fighting Liver Disease

Donna Henry Cryer’s life mission began in an unusual way: She developed an autoimmune disease as a young teen, and its effects eventually led to a liver transplant between her first and second year of law school at Georgetown University, following her Taft and Harvard careers, both marked by bouts of illness.

Cryer cohosting a culinary event with celebrity chef Daniel Thomas to raise awareness about nonalcoholic steatohepatitis (NASH) and liver health as part of the 2021 International NASH Day campaign.

Cryer cohosting a culinary event with celebrity chef Daniel Thomas to raise awareness about nonalcoholic steatohepatitis (NASH) and liver health as part of the 2021 International NASH Day campaign.

Now, as a three-decade transplant survivor, Cryer (Taft Class of ’88 and a former Taft trustee) leads the Global Liver Institute, a multinational, patient-driven advocacy organization dedicated to fighting liver disease and finding treatments to help those with liver illnesses and other rare diseases live as fully as possible.

Having a serious illness as a teenager limited Cryer’s ability to participate in athletics, so she turned to the stage at Taft. There, she gained speaking skills that now serve her as she speaks and raises funds to fight liver diseases worldwide. She is a frequent commentator on liver health and patient advocacy in print, online, and on television.

“It really did shape my identity,” Cryer says. “But it never took me off track. I really had no plans for a nonprofit career or to build my own nonprofit organization.” But her experiences left her wanting change.

“There was no effective liver advocacy, only misconceptions, misunderstandings, misdiagnoses,” she continues. “I was mindful that other patients…might not necessarily experience the same outcomes [I did]. There’s a Toni Morrison quote: ‘If you can’t find the book that you want to read, it’s because you were meant to write it.’ The Global Liver Institute is the book I was meant to write.”

Founded in 2014, GLI has raised more than $10 million for liver health initiatives and convenes more than 200 organizations within the liver cancers, nonalcoholic steatohepatitis (NASH), pediatric and rare liver diseases, and general liver health communities across GLI’s councils and its Liver Action Network. Cryer says GLI helps connect agencies to bring accountability to innovation, regulation, and adoption of best practices to optimize outcomes.

The challenge, Cryer says, is the lack of awareness about liver diseases and a stigma related to liver illnesses, with many assuming liver damage is due to alcohol or drug use. More than half a billion people suffer with liver ailments due to lack of education and access to medical treatment.

“And what little people do know is wrong,” she says. “The greatest challenge is that the stigma is so high that people don’t come forward, so people don’t know there are so many other people in their circle who have liver disease.”

One out of four people has some form of liver disease, Cryer says.

“We’re seeing cases of children with acute hepatitis right now, a mystery, but there are thousands and thousands of children who were born with liver diseases, like biliary atresia, who develop autoimmune diseases like I did as a young person, and rising cases of obesity [leading to] cases of pediatric fatty liver disease.

“Everyone has a liver, and everyone is at risk of liver disease,” she says. Unlike conditions such as heart disease, many people have no awareness of liver illnesses, which can lead to poor outcomes.

“Because so many people are undiagnosed or are diagnosed so late, there aren’t many survivors,” Cryer says.

Undeterred, Cryer has rallied patients, physicians, and researchers to focus attention on liver diseases, bringing the patient’s experiences to the forefront. She credits Taft with giving her the skills to sit in multinational boardrooms and advocate for liver research funds.

“I felt like I belonged in any boardroom I entered, and that sense allowed me to have the ambition to build a global organization. Why would I not be able to transform the entire field of hepatology?”

Cryer’s expertise and effectiveness in advancing the voice of patients in defining and designing equitable health care has been recognized by the United States Congress and the White House. In 2021, she received both the Global Genes RARE Champions of Hope Founder’s Award and the American Association for the Study of the Liver Distinguished Advocacy Service Award. She has been named one of the Top Blacks in Healthcare by the Milken Institute at the George Washington University School of Public Health and, one of the Top 10 Patients Who Make An Impact by Health 2.0, and one of PharmaVoice’s 100 Most Inspiring People.

“Having been the first in many situations—the first patient, the first Black person and Black woman in those seats as well—there’s a lot of responsibility to make sure I’m not last,” Cryer says.

—Bonnie Blackburn-Penhollow ’84