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...

Dr. Theresa “Terry” Cullen is on a mission to make Pima County, Arizona one of the healthiest counties in the nation. It’s a challenging goal, and one that will take dedication and a willingness to fight for what’s right. But, Terry is a self-described, life-long pugilist – with an approach to healthcare that goes beyond policies and programs. Everything she does is rooted in her deep belief in accompaniment; that her role is to walk alongside her patients and community offering empathy, dignity and respect.

We discuss:

• Her work as a rural doctor with the Indian Health Service
• Deploying to West Africa in 2014 for the Ebola crisis
• Why the VA and DOD could not agree on electronic health records
• Her commitment to make Pima county one of the healthiest in the nation

Terry reminds us that sometimes we need to step back and look at the work we do through a new lens:

“My husband's an artist, and he challenges me all the time to look at something and look at the light. Look at the composition. Look at where it is. What's the pattern there? You know, and a lot of medicine is based on pattern, but think of a disruptive pattern. Think of a puzzle where the piece doesn't fit and what do you need to do to make that piece fit? Because if it falls into place, maybe the whole thing will heal.”

Relevant Links

Definition of pugilist

Resolve to save lives - 717 alliance

Healthy Pima Indicators

About Our Guest

Theresa Cullen is currently the Public Health Director of Pima County, Arizona. She has developed a strategic approach to transformational health status change with a goal of health equity through supporting a learning public health system model based on data and action. She continues to work closely with Tribal, federal, state and local partners to ensure that community needs are integrated into planning with a goal of health justice. Dr. Cullen, RADM (retired) USPHS, began her family medicine clinical career with Indian Health Service (IHS) and worked in leadership positions for 25 years with American Indian/Alaska Native communities with a goal of improving health status through innovation and data informatics. Dr. Cullen worked as the Chief Medical Information Officer for the Veterans Health Administration from 2012-2015 and Associate Director of Global Health Informatics at the Regenstrief Institute. She has been honored with multiple local, state and national awards including the USPHS Distinguished Service Medal, the University of Arizona Medical College Alumni Award, and the AMIA Don Detmer Award for informatics health policy contributions.

Source: https://academyhealth.org/about/people/theresa-cullen-md-ms

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With the election just days away, Larry Levitt joins me to discuss where Harris and Trump stand on key health issues: reproductive health, affordability and Medicaid. While health has not taken center stage (as it has in the past), the outcome of this election will have profound impacts on every aspect of health in the years ahead.

We discuss:

• Why the ACA is no longer a political battlefield
• The shifting dynamics of abortion as a single-issue vote
• Why medical debt and drug prices are key affordability issues to watch
• Whether we could see bipartisan progress on AI governance, long term care or PBM reform over the next four years

Larry reminds us that health IS an economic issue:

“People think of the economy and health care being separate issues, but they're In fact, not separate issues at all. I mean, we spend an enormous amount on health care. A lot of people's household budgets go to health care. So, you know, when you talk about an economic issue, health is an economic issue, issue for people.”

Relevant Links

KFF panel: What the 2024 election could mean for health coverage, affordability and the budget

KFF election 2024 page

How medical debt is the canary in the coal mine for health affordability [article]

Project 2025

Abortion-related state ballot measures

About Our Guest

Larry Levitt is the executive vice president for health policy, overseeing KFF’s policy work on Medicare, Medicaid, the health care marketplace, the Affordable Care Act, racial equity, women’s health, and global health. He previously was editor-in-chief of kaisernetwork.org, which was KFF’s online health policy news and information service and directed KFF’s communications.

Prior to joining KFF, Levitt served as a senior health policy adviser to the White House and the Department of Health and Human Services, working on the development of the Clinton Administration’s Health Security Act and other health policy initiatives. Earlier, he was the special assistant for health policy with California Insurance Commissioner John Garamendi, a medical economist with Kaiser Permanente, and served in a number of positions in the Massachusetts state government.

Levitt holds a bachelor’s degree in economics from the University of California, Berkeley, and a master’s degree in public policy from the Kennedy School of Government at Harvard University.

Source: https://www.kff.org/person/larry-levitt/

Stay Informed

Sign up for The Other 80 Newsletter to receive a monthly update with reflections, news, events, jobs and funding curated for you by Claudia. Click here to sign up.

Connect With Us

For more information on The Other 80 please visit our website - www.theother80.com. To connect with our team, please email claudia@theother80.com and...