Donna Cryer

Will Bachman  00:01

Hello, and welcome to the 92 report conversations with members of the Harvard and Radcliffe class of 1992. I’m your host will Bachman. And I’m excited to be here today with my good friend Donna Cryer. Donna, welcome to the show.

Donna Cryer  00:16

Thank you so much well, it is a pleasure,

Will Bachman  00:20

Donna, you can do a better job than I can give us a overview of your journey since college I instead of doing an intro to ask you to do a service self intro and tell us about your, your journey.

Donna Cryer  00:34

The journey since college since 1992, has been marked most profoundly by my liver transplant by by my turn as a patient, patient advocate and now leader, as a leader of a patient advocacy organization that spans 42 states and three countries as of this recording, which was something I had never contemplated, you know, I was very sick. For much of college as, as some members of the class were all too aware, and I really could not be more grateful to this day to my my rooming group. And and others who didn’t know and who did, literally, and sometimes, you know, hold me up, but definitely held that information and supported me when my conditions got very, very extreme and impactful. And and also, let me enjoy the times when I was, you know perfectly well and seems like everybody else, and allowed me to have really full college experience. But the journey since graduating really started to you know, immediately after in trying to find a diagnosis of why I was so so Ill eventually realizing after many, many doctors in many different states that I had an inflammatory bowel disease that led to an autoimmune liver disease, a rare autoimmune liver disease. And, and by the time I was between first and second years of law school, which I did go ahead and start, I needed a liver transplant, I was told I had seven days to live. And in that time, though, I was I was surrounded by several of our classmates who were going to medical school at Johns Hopkins. So thank you to all of those. Thank you. And then I embarked on a career in health care after that. identifying issues that were that I thought could be improved in the transplant system, and then broadening to a larger career in health care, for profit nonprofit before founding my own organization, the global liver Institute, around the 20th anniversary of my of my transplant, really thinking deeply. And looking around the landscape and recognizing that other patients who were coming behind me would not have the same access to innovation and care that saved my life and frankly still sustains me today. And so I believe it’s Toni Morrison who says if you can’t find the book that you want to read, it means that you were meant to write it. So I’ve been writing the book of of advocacy in the liver disease space now for about seven years. And you know, last year was very proud to receive the Distinguished Service Advocacy Award from the our hepatology Medical Society partner.

Will Bachman  04:24

Congratulations on that. Thank you. That is amazing. Can you tell us a bit about the transplant? I believe that you were one of the earlier transplant patients and one of the perhaps the longest surviving liver transplant patient can tell us a little bit about that experience. And

Donna Cryer  04:47

yes, unfortunately, you know, things I’m glad I didn’t know at the time. We’ll put it under that rubric. I did not know at the time. how few people who needed transplants actually got them. I didn’t know at the time how few African Americans and other people of color had access to the waiting list itself, as well as it were actually transplanted. And so it really was grace and mercy, particularly in those early days when in addition to all of that, the medications were so new. So medications that are now standard of care in transplantation, were still known by letters and numbers when I started on them, and so it’s interesting now, in the past year, having been involved in congressional testimony, to solve those issues, to raise attention, about the need for greater accountability and transparency in organ procurement organizations in changes in organ allocation policy, in shining a spotlight on inequities, not just in the transplant waiting list, but in inequities in approaching families to donate in patients getting on the waitlist, in surviving, even in their hospital, while they’re on the waitlist and surviving afterwards. And so determining ways to fix all of those factors and so that others can enjoy the 27 years in counting of truly healthy, vibrant life that I have. And so yes, being out this far, I am changing the prognosis with every, you know, day that I live and every peloton record that I shatter even if they’re only my own. And and so it is an honor and a privilege to have your life, just the existence of life have this much meaning to certainly my family, but to the defining the field and to bringing hope to others that even in their lowest or sickest moments that they can aspire to this level of health and longevity.

Will Bachman  07:49

You’ve mentioned equal access of African Americans to transplants, Could you walk us through as a patient advocate? What are the what are the key issues that you’ve been that you’ve identified and some of the solutions that you’re proposing, including including this matter of unequal access?

Donna Cryer  08:16

So, you know, in the in the United States, and it is interesting, since that now, I more used to operating in multiple countries, I have to specify which country’s health system I’m I’m critiquing. So I’ll I’ll speak to the transplant system in the United States. Although we do look at access to transplantation, you know, globally and and what does that mean, but in the United States, really thinking through levels of, of, of, of lack of access. So that the certainly that the COVID pandemic has on Earth in a way that many of us knew but few paid attention to. And we were really honored when to to create an award last fall to give to a fantastic group of nurses in New York, who African American Nurses who just really felt that that they weren’t doing well enough. And so I’ll talk to you some about the viewpoint that they that they took on, on on the challenge, because I think it’s a really exciting model of addressing the challenge. They had, they have a two fold model, and I think both are necessary. One was, is to We have a an eight speaker series on diversity, equity inclusion for their hospital institution to overcome the systemic bias that existed within the institution to address you know why at an organization, like many in this country that had overflowing with resources really had not connected with the community at all, and was not focused on ensuring that everyone in their larger area was referred for transplant early. So if someone doesn’t have insurance, and someone who doesn’t have a primary care doctor, and then they’re less likely to be diagnosed with conditions and then referred into transplant early, let alone evaluated to be on the waiting list. And then, you know, even outside of liver transplants, kidney transplants are the most frequent. And, you know, we’ve just been working with the National Kidney funds to look at how kidney function is measured in a way that there’s literally a separate, if you look on your labs, anybody, there’s a separate measurement for kidney function for African Americans and for non African Americans, and the historic, you know, roots of that are really not valid. And so pointing things out like that, that can seem there on its face, very neutral, but are actually hampering people’s ability to be highly, you know, rank high on the list and be the next to transplant. And so addressing all of those issues in internally, or even some people are denied transplant, not because they are physically or medically eligible, but because their support system is not deemed sufficient to care for them afterwards. And so those types of very subjective issues. And then the second part of their model was was going in and taking a community needs assessment at some local churches sort of coming off of the The Shining hill of academia, and going into the communities introducing themselves and not with we want to talk about transplantation, but with a, what do you as a community eat? And then eventually, they did ask about transplantation. And so not only have they been able to build relationships that have resulted in more referrals for people to be transplanted, but the church that they started working with overcame vaccine hesitancy and has actually become a vaccine hub and has vaccinated 20,000 people. So really, when I think about solving the inequities in in organ donation and transplantation, they really are that holistic and that broad. And so from a policy perspective that we’re working on here in DC to supporting groups that create more trust and a greater flow of people into transplant centers, and then ensuring that they’re treated appropriately with with while they’re within the walls of those transplant centers are all part of the solution.

Will Bachman  14:06

What are the two or three most urgent issues top priorities for your advocacy organization? Is it you know, what the two or three changes that you’d most want to see around transplants? Funding? Is it you know, getting enough, you know, donations? Is it opt in automatic automatic opt in or, or drugs? Or like what are some of the most pressing changes you’d like to see?

Donna Cryer  14:37

The most are top issue right now and one that we are actively working on with the administration and actually I have a paper that has just come out today. At the time of this of this recording. I’m advocates, first and foremost for an office of Organ Policy. You know, right now, where transplant issues are in the, you know, HHS bureaucracy is in a very small office where it’s very easy for these issues to be ignored. And you feel that if it was moved into HHS and given more prominence and budget, it could. It could do so much more. And we are excited that there is bipartisan support for this, we are excited that there is a rational economic case for it as well. A lot of you know, transplant patients or on the kidney side are in the end stage renal disease program. And we do so much better with transplantation. For liver patients, we frankly, we just die. But there’s an opportunity if there was greater accountability. And if all of the organ procurement organizations operated at the level of the highest performing organ procurement organizations for liver patients, our waitlist could be eliminated, particularly for all of our pediatric liver transplant. Patients who are waiting, all have our rare disease, like I was liver transplant recipients who were waiting who we know do so well. That waitlist for liver transplants, which is only around 13,000, could be eliminated if if we just everybody did the best job worked at the level of the top performers. So that is our number one issue to have this consolidated in a way, that consistent attention that there was some muscle so that we really could get the accountability that we that we need to do what we know and be done.

Will Bachman  17:14

And let’s say that office was created, what are the key changes that they would drive to, you know, to solve some of the problems? Like, is it a matter of just making sure people kind of opt in automatically on their driver’s license to organ donation? I mean, so that if someone is in a car accident or something their organs can be donated? Or what are some of the changes that a office of organ registry policy would would be able to, to dress?

Donna Cryer  17:46

Well, first and foremost, we know that in a lot of it, one of the key issues is that there hasn’t been transparency of data. And so the organ procurement organizations which have a monopoly in this country, in their areas of self report their data, so if they say we did a great job, nobody can say that they can’t, and I don’t think that’s any way to run anything. So we would have clear, consistent, you know, data that came from sources that anybody could could look at and check. And, you know, from that alone, the studies that we’ve done with with many others, show that there is an increased potential in so many areas, and if we had those transparent metrics, then we’d be able to actually hope help those that need help. It was interesting after our congressional hearing, that a number of the organizations broke off from the trade association, to do just that, to create clear metrics amongst themselves, to see how they could perform better. And often that that means investing more money, not in fancy jobs, but in reaching out to the community in investing in more staff who could be available 24/7 at hospitals to talk to families, who unfortunately have lost a loved one, to invest in technology, that the organs have perfused and basically last long enough to be able to be transplanted and transplanted more, more effectively. So So there are a number of things that we know from, you know, the really effective organ procurement organizations and If we had clear transparent data, we could ensure that more more areas operated like that you shouldn’t have to, as a patient, travel to another state to feel that you had a better chance or a fair chance at getting a transplant, you shouldn’t have to bring your own organ. And, and, and do all of the campaigns that we see online, that just break my heart to try to find a living donor, you know, people and families who are that sick, really shouldn’t have the added burden of cobbling together their own solutions and finding, finding their own donor or, or finding ways to move their their families to other states, they should be able to have a fair chance at having a donated liver a donated organ in their home states.

Will Bachman  21:16

There’s so many ethical issues surrounding this, I imagine that you’ve, you know, thought deeply about that and perhaps engaged with bioethicists and so forth. Should we pay organ donors? What are your thoughts about some some of the ethical issues and incentives that you know that that’s around this issue?

Donna Cryer  21:40

I think, yes. So I have been working on the bioethics of transplantation. For a long time, I think I published I remember doing my first original research in my apartment in Crystal City, in the 1996, or so. So I’ve been working on this a long, a long time. Where I think that the community agrees is that there is sufficient out altruistic donation. If people were asked and asked were educated and asked in the in the right way, overwhelmingly, the public supports donation, most people aren’t asked, or they don’t have a conversation with their families, or their donor card is somewhere else. And so they aren’t given the opportunity to donate. The other issue is that if you should not have to basically pay to donate so for living all of their costs? Well, first of all, they’re living donors, the majority of costs are, are paid by the recipients insurance. So there’s often a myth that the donor has to pay, they do not, but there may be costs that they incur from time off work or childcare or, you know, we’ve had people who needed to, you know, pay for somebody to run their farm while they while they you know, recuperated from from donating an organ. And so, all the costs that are associated with a living donor, making that gift should be covered. And then there is a living donor act that we are moving to have, and we have seen increases in the number of categories of costs covered and the amount of those costs covered. But we want to make sure that it is not a burden at all or any more burden than the physical gift is to living donors. And so I think that’s that’s where the the bioethics are, but there is no credible movement to pay people to donate. We wouldn’t want to have that be coercive in any way or to create a market for for organs or to have, you know, poor people sacrificing organs for wealthier people. So we don’t want that to happen. But you shouldn’t have to have a cost burden to do a living you shouldn’t have to pay for the privilege to donate.

Will Bachman  24:47

So I, what about your journey would most surprise your college age self?

Donna Cryer  24:58

Oh, what about about my journey would surprise my college age self. I think I had a vision of my college age self that is quieter than perhaps it classmates would tell me that I that I was so I’ll just talk about what would surprise me, I think what surprises me is that I have a life of public advocacy that I spend my days disrupting and talking, I talk a lot of smack and and I am that is not not what I thought I would now be doing. I thought it was very polite, shy, genteel young lady, and maybe I was at some point, but the fact that my most of my life is pushing up position. You know, standing my ground you know, carrying weight, and being the voice for millions of people. In the before times, it was a lot on state. But it’s in board meetings, and it’s on camera a lot. You know, the, you know, the thought that I have now as my Facebook friends now have, you know, gone through, you know, a photoshoot is not a, an uncommon thing to be scheduled in my weak would have just, I would not, I think my college self would not have believed that at all. So, all those things about this very public persona that I have become, would have surprised me.

Will Bachman  27:05

Are there any classes that you took at Harvard that have had a particular effect on you that, you know, continued to resonate?

Donna Cryer  27:18

You know, I think all of the classes that I took with Professor Sandel stick with me. And also just my time with with with Professor Sandel himself, I know all of us remember, you know, the tradition of inviting up, you know, Professor for, you know, for dinner in the in the dining halls? And if you said no, he never does those because He reserves his evening for his family. And he, but he would meet with us and was very, of course available to us at other times. And so, that life lesson about personal priorities and boundaries. stuck with me, I think the most of anything that any of my professors ever said.

Will Bachman  28:24

Are there this is the Department of Culture on the show, are there any books or films that have particularly affected you or that you often find yourself recommending?

Donna Cryer  28:37

I, I, you know, I laugh when I’ve had conversations coming back into this year, and the most repeated statement, I say is that I had spent the, my break equally divided between the Bible and Harvard Business Review. And that has fortified me for coming into the new year and setting standards for the organization. And I think that describes my you know, approach as well as anything else, very firmly rooted in faith and trying to do whatever work before me as as a good person and in a way that nurtures good people and good things. You know, I’ve also just been reading or listening to on audiobook Jay Shetty is like a monk. So it’s a rather ecumenical, you know, approach but the same things are set. And I think when you share the same principles across theologies and books, that it must be a universal truth. So working on how i i manifest in the world, in, in my leadership and grow in my leadership, as this organization grows, is something that’s important and recognizing that as much as I pay attention to the technical infrastructure of our organization, the financial infrastructure, the how we principles of growth and scale and opportunities in the advocacy marketplace, if you if you will, if I don’t grow spiritually as a leader, then I won’t be well positioned to match that growth. So what that’s approach to how I’ve been collecting what I’ve been reading these days,

Will Bachman  31:27

yeah, what insights did you take from your reading of the Bible to apply to your leadership or the way you run the organization.

Donna Cryer  31:41

They’re very practical things. That’s just hold my tongue. Basically, you know, I mean, the, you know, something that is the, the actual versus the, you know, the power of life and death lie in your tongue. The practical implications of that are realizing that as a CEO, everything I say, to my staff, really affects their day. And so making sure that I recognize the power of that, and the effect that it has for good or ill, and making a choice that I am speaking, support and nurturing and, and, and hope and joy, to, to people, that it is that is a choice, and then something that I need that one that that bears watching. So something is as you know, as simple, as simple as that. You know, and also, you know, just the, the, I think I was looking at it the other day, at my elementary school, they had over the assembly hall, a quote from I believe it’s Philippians. So basically, it’s whatsoever things are true, whatsoever, things are honest, whatsoever, things are just whatsoever, things are pure, whatsoever, things are lovely, have good rapport, if there’s any virtue, if there be any praise, think of these things. And similarly, you know, in Buddhist teachings, when you think about if you should say something, is it true? Is it helpful? Is it spoken with kindness? Is it spoken gently? Is it timely? Those things, I think, helped me be a greater positive force within, you know, as as a leader, than if I was just left to the little hot thoughts that go through my head about things and so I think that even just the being mindful to pause actually ends up giving you incredible power to choose your thoughts and to choose your words that can make you more effective. And I’m sure they’re the last classes, you know, about, you know, effective speaking as well, but I, I find them here.

Will Bachman  34:40

How has your career leading a patient advocacy, organization and cause shaped your thinking and the way you perceive the world differently than, you know, your college itself or different than other educated adults. And I’m interested not just in the kind of thinking about the world of transplants and so forth, but just as you go out throughout your day reading the news or going through a city traveling around, how do you think that your professional work has shaped your kind of mental models,

Donna Cryer  35:22

it has definitely made me more empathetic. It has actually given me and my organization and advantage during the pandemic, in as much as we were already prepared to go remote because I had to work from home, you know, many days before, as a patient, so I created the entire organization with capability, you know, I think psychologically have weathered it better, because I’ve been, you know, dodging, getting ill from viruses, with the immuno suppressed immune system for almost almost 30 years. So it was more sort of welcoming everybody else i world. And, and ways of going through it, so it didn’t shake us in the same way. I also build in well, before I read, oh, Daniel Pink’s win is a great book about chronicity but as a patient, who has had to manage my energy and match it to high performance, and you know, and ambitions that that never flagged I had already, you know, created my work weeks it to maximize my, my performance and you know, Monday, we have days that I can do another look on the shelf, Cal Newports, deep work, I can do deep work. And then Tuesday, Wednesday, Thursdays are very involved, either speaking or with a team internal external meetings, and then Friday, starting to recover, wrap things up and so on that my perspective as a, as a patient, I think has given me an advantage into thinking about optimizing personal performance. My thinking as a patient you know, business wise, and just going through the, through the healthcare system, and then now being in various roles in charge of the health care system. Recognizing that there’s always a story behind the story, you know, I sit in Washington, DC, so often, by the time something comes out in the in the Washington Post, you know, we know the the background story to it, and recognizing what are real barriers to improving our health care system and what are misaligned incentives and Miss allocated resources. So, you know, I think my patient perspective of the world. One has given me a lot of time and forced time, where I’ve had to slow down and be thoughtful. But often it was to allowed me to observe things that I might, that I might have missed. And it allows me to force me really to re engineer things that I find as my team grows, or as I share some of these tactics, not only help people who have chronic illnesses, but are very helpful and appreciate by all of my staff and are now a you know, pandemic, post pandemic, age are now becoming more of the norm of how people work, and how people manage their time.

Will Bachman  39:44

Donna, for listeners who would like to find out more about your work in your organization, where would you point them online?

Donna Cryer  39:52

We are global liver.org. So that’s global like the world liver like the Oregon dot org. We are also on Instagram, global liver Institute and Facebook and Twitter.

Will Bachman  40:08

Fantastic. We will include those links in the show notes. Donna, thank you so much for joining today. Thank you and listeners, you can go to 92 report.com That’s nine to report.com for a full transcript of this episode and all our episodes and you can also sign up for an email list to get notified of future episodes. Thank you for listening