Nemours Children’s Health CEO Dr. R. Lawrence Moss on Innovation

April 6, 2023
Nemours Children’s has received a $78 million donation from the Lisa Dean Moseley Foundation to fund innovative clinical research; CEO R. Lawrence Moss, M.D., shares his perspectives on innovation

Last month, the leaders of Nemours Children’s Health, the integrated pediatric health system based in Wilmington, Delaware and Jacksonville, Florida, and with more than 95 care sites in four states (Delaware, Pennsylvania, New Jersey, and Florida) announced that their organization has received an exceptionally large philanthropic gift, which will help transform their ability to provide specialized care to children and young people in key clinical areas.

According to a press release posted to the organization’s website last month, “Nemours Children’s Health announced today a $78 million donation from the Lisa Dean Moseley Foundation of Wilmington, Delaware to fund new and innovative research programs and to dramatically expand Nemours Children’s capacity to provide clinical care for children with cancer, sickle cell disease, and other blood disorders. The announcement was made in the unfinished, fifth-floor shell space at Nemours Children’s Hospital, Delaware that will now become a new inpatient unit to be known as the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health.”

“I would like to express profound gratitude from all of Nemours to the Moseley Foundation for this generous gift to Delaware’s children. The new Moseley Foundation Institute will positively influence pediatric cancer and blood disorder care worldwide,” said Nemours Children’s Health president and CEO R. Lawrence Moss, M.D. on March 2, when the announcement was made. “Philanthropy of this magnitude allows us to transform our ability to improve the lives of children with cancer and blood disorders such as sickle cell disease. This gift will help us to provide better care and patient experience today, to conduct research that will improve tomorrow’s care, and to take concrete actions to ensure every child receives optimal care regardless of race or economic circumstances.”

“We are proud to partner with Nemours Children’s Health to champion innovative research and clinical care for kids with cancer and blood disorders,” said William J. Martin, Esq., president of the Lisa Dean Moseley Foundation. “Every child deserves the brightest future possible, and we are honored that Lisa’s legacy will allow Nemours to continue to make a profound impact on the children in Delaware and throughout the region, and in particular to help patients with diseases that have been long overlooked and underfunded, such as those afflicted with sickle cell disease.”

As the first press release noted, “The $78 million gift will allow Nemours to further its existing world-class capabilities and services to support and improve the health of Delaware’s children, which is aligned with Alfred I. duPont’s philanthropic vision and the funding of the Alfred I. duPont Charitable Trust.”

Furthermore, “Every dollar of the $78 million donation will be used to make immediate and long-term impacts on pediatric cancer and blood disorder treatment and research. The new initiatives include:

Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health: The state-of-the-art, family-oriented Moseley Foundation Institute will accommodate the growing number of children seeking Nemours’ care, together with their siblings and parents. Along with the addition of 48 inpatient beds, the new space will feature isolation areas to protect immunocompromised patients, a dedicated medication room, expanded comprehensive clinic and infusion room capacity, and supportive care services. The center will overlook the beautiful gardens of Nemours Estate, with extraordinary views and design that promotes healing and recovery.

> Lisa Dean Moseley Foundation Presidential Endowed Chair for Institute Director: A Presidential Endowed Chair will be named to support the inaugural Moseley Foundation Institute director’s work in pediatric patient care, research and other high priority areas.

> Lisa Dean Moseley Foundation Endowed Chair for Sickle Cell Disease: In 2021, Nemours received a $10.5 million National Institutes of Health (NIH) grant to support the Delaware Comprehensive Sickle Cell Research Program. The five-year award from the NIH Center of Biomedical Research Excellence (COBRE) supports clinical, translational, and psychosocial research in sickle cell disease. The Moseley Foundation Endowed Chair for Sickle Cell Disease will further this work by conducting and overseeing sickle cell disease research and clinical care. The chair will also focus on reducing disparities in access to care since this disease disproportionately impacts minority communities.

> Lisa Dean Moseley Foundation Institute Endowed Laureate Program: The Moseley Foundation Institute will create an annual research goal Request for Proposals (RFP) focused on cancer and blood disorders research. A Scientific Review Board convened by the Moseley Foundation Institute will review these proposals, with a focus on engaging and funding leading global research teams from a variety of disciplines both inside and outside of traditional laboratory research.

> Lisa Dean Moseley Foundation International Symposium: The symposium, to be held every other year, will showcase the Moseley Foundation Institute’s researchers’ accomplishments, and allow top international researchers and scholars to learn from and collaborate with one another to improve care.

“Progress in the care and outcomes for children with cancer and blood disorders has been dependent on innovative research,” said Edward Anders Kolb, M.D., Director of the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health. “Nemours is committed to developing new treatment options to promote better outcomes for pediatric patients and their families. This momentous gift will allow Nemours to further improve our facility and bring together the best and brightest minds dedicated to this cause.”

And, the press release went on, “Nemours Children’s Center for Cancer and Blood Disorders (NCCBD) is a leader in cancer and blood disorder care and has achieved many accolades since its inception 30 years ago, including, but not limited to:

> Developing two fully accredited transplant and cellular therapy programs supporting children with cancer, sickle cell disease, and other blood disorders;

> Securing the designation as a National Cancer Institute (NCI) Community Oncology Research Program, ranked second nationwide in enrolling children in NCI-funded trials;

> Achieving a three-fold increase in the number of patients identified to have cancer predisposition syndrome by Nemours’ Cancer Genetics Program. This program provides fully integrated and advanced molecular diagnostics for children with a personal or family history of cancer.

> Conducting active Nemours investigator-initiated research projects in sickle cell disease that focus on novel diagnostic tools, research approaches, and intervention strategies to mitigate the effects of racism and stigma on disease management.

To learn more about how this gift will impact the future of care for kids with cancer and blood disorders, please visit: www.nemours.org/moseleyinstitute.”

Earlier this week, Dr. Moss sat down with Healthcare Innovation Editor-in-Chief Mark Hagland to discuss the Lisa Dean Moseley Foundation gift that is facilitating the creation of the Moseley Foundation Institute, as well as a gift from 2022 that is helping the health system address health equity issues, as well as broader issues around healthcare policy, payment, and advocacy. Below are excerpts from that interview.

This philanthropic gift from the Lisa Dean Moseley Foundation is quite exceptional; congratulations.

That’s right. In fact, it comes after a wonderful philanthropic gift last year that I’d like to talk about also. First of all, with this foundation gift, as noted in our announcement, we’re creating the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health. It will involve a clinical, research infrastructure like no others [in the pediatric health system in the U.S.] With regard to the blood disorders, we’re going to do something really special on sickle cell disease—the most profound example of race-based inequity in the whole healthcare system. It’s unconscionable. Comparing cystic fibrosis and sickle cell is a useful exercise: both are incredibly painful, debilitating diseases that begin in childhood. Thirty years ago, they had broadly equal outcomes. In the 30 years of my career, cystic fibrosis has been transformed: people are living good lives, having careers; yet sickle cell is still the same as it was 30 years ago, in terms of typical outcomes for patients. What’s the difference between the two? It’s a racial difference. The Moseley Institute will build on our foundation; our agenda is transform the experience of people with sickle cell.

And there is a second gift?

Yes, I also wanted to highlight the fact that last year, we received a $25 million gift in Orlando from the Alan H. Ginsburg Family Foundation to create the Ginsburg Institute for Health Equity. In a state that’s not exactly a shining beacon of equity right now, there’s a lot of opportunity there.

[Read about the Alan H. Ginsburg Family Foundation gift here. As the Feb. 24, 2022 press release noted, Nemours Children’s Health today announced a transformative $25 million gift from Orlando philanthropist Alan H. Ginsburg and the Ginsburg Family Foundation to create the Ginsburg Institute for Health Equity at Nemours Children’s Health. This first-of-its-kind initiative will advance health equity for children in medically underserved communities by building a world-class interdisciplinary program that goes beyond medicine alone.” And Dr. Moss stated at the time that ““Establishing the Ginsburg Institute for Health Equity at Nemours Children’s Health is a turning point in addressing the profound health disparities that have hurt our nation’s children for decades. Part think-tank, part health-pilot incubator, the Ginsburg Institute will spur discovery and innovation to expand the health and well-being of children everywhere.”]

We’re incredibly grateful to these donors; these are monumental gifts that will have decades of impact; and my job is to make sure we do it wisely and right.

Per the Ginsburg Institute for Health Equity, what’s different in the pediatric space about the health equity discussion from the ongoing discussion taking place in the adult healthcare space?

In the pediatric space, we have an opportunity to set a lifelong trajectory of health. And the outcome of inequity that we see in the adult population—huge increases in cancer, heart disease, diabetes mortality in disadvantaged populations—we can nip around the edges, but that die is cast. We make changes in childhood, and that’s huge.

A few years ago, at the day-long conference that Nemours held in Washington, D.C., to discuss healthcare policy and strategy in the pediatric space, you had told a very impactful story about a patient, Wendell, who was tragically burned over 80 percent of his body, in an accident that took place in an unsafe, makeshift playground in a socioeconomically disadvantaged neighborhood. You had used that example to illustrate how important it is to provide for not only healthcare, but the opportunity for health itself, including healthy living and growing spaces, for children.

That’s exactly right. The tragedy is that Wendell’s accident might never have taken place had he had access to a physically safe outdoor play environment. The fundamental truth is that medical and health events and developments in childhood impact children for the rest of their lives. We’ve got to address health and health equity when people are children. Wendell’s case involved a tragic accident, but we see patterns play out with regard to diabetes, heart disease, and cancer, for so many children, across the course of their lives, in situations not involving a single precipitating event. We’ve got to address health when people are still children.

Children’s hospitals and children’s health systems are chronically under-funded. As a national advocate for children’s health and healthcare, how do you discuss Medicaid reimbursement issues with policymakers?

First of all, let’s start with some facts: 50-70 percent of the kids in the country get their care funded by Medicaid. Fact 2: Medicaid covers 30-60 percent of the cost, not the charges, of that care, on a good day. So for the majority of kids we see in children’s hospitals in the U.S., we lose money. And the bottom line is, this country has not created a sustainable mechanism for taking care of our kids who need medical care. So the thing that concerns me is, most of our legislators don’t realize that. They’re just not aware of it. The common parlance, and myth, is that ‘Medicaid is the program for poor, lazy people who won’t work.’ Of course, that’s a complete misunderstanding. And so somehow we need to be able to talk about children’s medical care without being mired in the misconceptions and false beliefs about Medicaid.

What’s more, there’s a specific agenda in the adult-hospital world, among public hospitals, that has been emerging recently. Some advocates for adult hospitals and health systems are arguing that they, with average 15- and 20-percent reimbursement shares based on Medicaid, are describing themselves as being dependent on public funding, which they say is inadequate. Meanwhile, the bulk of their reimbursement is coming from Medicare, which, though it doesn’t pay generally, does cover costs. That’s simply not true for us in children’s hospitals, as reimbursed by Medicaid. And the mingling of the ideas is challenging to us, when it comes to advocacy. We don’t want children’s hospitals left out in the cold. So it’s important for us to speak out and make sure that our reimbursement environment is understood and addressed.

As the CEO of an organization focused on innovation, how would you frame your overall strategy for Nemours going forward?

Our overarching mission is this: American healthcare can be fixed. And what’s important is to understand what health is, which is so much broader than healthcare. As you know, the bulk of the inputs to an individual’s health are from outside the medical system, and have to do with health and environment. And we need as a healthcare system to pay for health. Let’s start with children. That pretty much embodies what we’re about. And 80 percent of health is not medical care. We’re invested in everything else as well as medical care. Our entire$4 trillion expenditure starts with medical; but the opportunity is in health. And with 7 percent of that total spend, we can make some radical changes—7 percent is the total percentage of healthcare spending on children’s care.

I want people to see this as simple, because it isn’t complicated. People have this refrain about how complicated it is. Know what it is, put the right incentives in place, and let it operate in the marketplace. And do it with kids, because it costs one-tenth, and has ten times the impact.

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