On so many issues, Congress has not been willing or able to act. But when faced with horrifying stories of death and mismanagement, Congress finally passed legislation to reform the US organ transplant system. They did so because people like Donna Cryer, a transplant recipient and patient advocate, demanded a better system for Americans who need lifesaving organ transplants. Now, as the new law moves into implementation, the work continues.

In this episode, Donna and I discuss:

• The new legislation that is breaking up the deadly organ transplant monopoly
• How ignoring the expertise and insights of patients dooms us to slow progress making healthcare safer and better
• Her advice for young people: “take your shot”

Donna says we all need to start listening more closely to patients with lived experience:

“I often think if you... had many people with great deals of experience and intelligence who were highly motivated to help you achieve your goal. Why would you not want to use them? Why would you not want to partner with them? Why would you work really, really hard to keep them away from solving the problem? And that's how people treat patients and patient advocates.”

Relevant Links

Donna Cryer’s testimony to the Senate Finance Committee on organ transplant system failures (just past the 48:00 mark)

Summary of the new law to break up the organ transplantation monopoly

More about the Global Liver Institute

See more details about the Advanced Advocacy Academy Donna's organization launched

Visit UNOS’ website

About Our Guest

Donna R. Cryer, JD is the Founder and former Chief Executive Officer of Global Liver Institute, the only patient-driven liver health nonprofit operating across the US, EU, and UK. GLI convenes the NASH, Liver Cancer and Pediatric and Rare Liver Disease Councils, as well as the Liver Action Network, collectively more than 200 organizations.

Mrs. Cryer has channeled her personal experience as a patient with inflammatory bowel disease and a 29-year liver transplant recipient into professional advocacy across a career in law, policy, consulting, public relations, clinical trial recruitment, and nonprofit management.

At GLI, Mrs. Cryer has raised more than $10 million for liver health initiatives. She is a frequent speaker on the topic of patient-centeredness and patient engagement in healthcare transformation and created a unique model for advocacy that mobilizes patients, influences policy, and coalesces clinicians to improve patient outcomes.

Mrs. Cryer serves on the Boards of Directors for the Council of Medical Specialty Societies, Sibley Memorial Hospital/Johns Hopkins Medicine, the Innovation and Value Initiative (IVI), and the Clinical Trials Transformation Initiative. She was the first patient to serve on the ABIM Gastroenterology Specialty Board, was one of the founding members of the AASLD Patient Advisory Committee and is the Community Representative on the AASLD NASH Task Force. She has been named one of the Top Blacks in Healthcare by the Milken Institute at GW School of Public Health and BlackDoctors.org, one of the Top 10 Patients Who Make An Impact by Health 2.0 and one of PharmaVoice’s 100 Most...