Sickle Cell Disease (SCD) is a genetic blood disorder that affects approximately 100,000 Americans, the majority of whom are Black and Latino. Individuals born with SCD develop red blood cells shaped like a crescent moon, or sickle, resulting in vaso-occlusive crises that can cause significant pain, stroke, infections, organ damage, and various other complications. Despite notable advancements in the last five years, the median lifespan for a patient with SCD is 54 years, significantly lower than the general population.
In 2021, the Dalio Center launched a SCD program to improve patient experience, increase access to care, provide resources to patients, families, and providers, and create innovative programs to promote the highest quality of care for this patient population.
Our sickle cell program is organized into three strategic priority areas: (1) clinical care optimization, (2) pediatric to adult transition, and (3) education and resources. All of these operate on a foundation of shared governance.
After two years of planning, the Dalio Center launched a national sickle cell awareness campaign, aiming to empower patients with SCD and foster a collective commitment to advancing sickle cell research, care, management, and treatment across the U.S.
To effectively raise awareness, we collaborated with influential figures in basketball—a sport known for its advocacy in social and health justice. We collaborated with the National Basketball Association (NBA), NBA2K, the NBA Players Association, and individual players, centering our campaign around our limited-edition red and black basketball symbolizing a sickled red blood cell.
Our collaboration with NBA2K significantly amplified our awareness efforts. With the launch of their latest version, 2K25, in early September, the game featured the image of our sickle cell awareness ball. In addition to showcasing the ball, NBA2K included important background information on sickle cell disease and provided links to our website, sicklecellball.com, within the game. The ball was prominently highlighted in their Courtside Report, further enhancing visibility for our campaign and helping to educate players about this critical health issue.
Sicklecellball.com was created as the educational backbone of the campaign and provided basic information on sickle cell disease as well as shared the experiences of those living with the SCD. Six weeks after the campaign launch, it had over 80,000 visits from all 50 states and 70+ countries.
80,000+
visits in 2 months
Including a diverse range of institutions and community-based organizations (CBOs) across the country was crucial to our campaign's success. We collaborated with numerous hospital systems, CBOs, and community leaders, including New Heights and Next Step. For New Heights, a Brooklyn-based organization that engages local youth in basketball, we donated basketballs to their program and participated in games to educate teams about sickle cell disease. With Next Step, which supports young people with chronic illnesses during their transition to adulthood, we shared basketballs, and they joined the social media campaign. Our team members also participated in their Sickle Cell “Campference”, an overnight program designed for young people living with similar diagnoses.
At the heart of our awareness campaign was a comprehensive social media strategy aimed at maximizing outreach. Professional athletes such as NBA player Taj Gibson and former NFL star Devin McCourty leveraged their platforms to spread our message. Influencers known for their basketball trick shots, including Trick Shot Cop, Tristan Jass, and Bree Green, played a vital role in elevating awareness by sharing our cause with their substantial Instagram followings. Actors Ramon Reed and Shondrella Avery, both of whom have personal ties to sickle cell disease, participated in the campaign. This multi-faceted approach not only broadened our reach but also engaged diverse audiences in meaningful conversations about sickle cell disease.
260M
earned media reach
2.5M
influencer impressions
4.9M
#IBall4SickleCell reach
New Heights Event
On September 20, 2024, the Dalio Center hosted the Sickle Cell Patient Experience Event at the National Basketball Players Association in New York City. Patients and families affected by sickle cell disease were invited to eat, play basketball and video games, engage in the social media campaign, and interact with NBA legends John Starks and Danny Green.
Disparities in kidney disease are well documented, with End Stage Kidney Disease (ESKD) disproportionately affecting individuals with low socioeconomic status, Black and Hispanic populations, and those facing housing insecurity. The Dalio Center partnered with the Rogosin Institute to expand the Prevention and Education in Advanced Kidney Disease (PEAK) program to NewYork-Presbyterian/Columbia University Irving Medical Center and NewYork-Presbyterian Allen Hospital, building on its success at NewYork-Presbyterian/Weill Cornell Medical Center.
This initiative features a collaborative, bilingual team of physicians, nurse educators, social workers, dietitians, and peer mentors, supported by analytics to track program impact. A key principle is involving family and caregivers as essential members of the care team, which enhances pre-emptive kidney transplant discussions and supports patients opting for home dialysis modalities. The program achieved remarkable success, exceeding national and local averages in pre-emptive transplant rates, home dialysis rates, peripheral vascular access placement, and initiation of dialysis without inpatient admission. Additionally, the PEAK program is proud to be a top finalist for the 2024 Bernard J. Tyson National Award for Excellence in Pursuit of Healthcare Equity.
376
patients enrolled
27
patients transplanted
10k
kits rolled out in February 2024
2k+
kits ordered by units for pediatric and maternal patients
50+
attendees at Crown Hair Care Ribbon Cutting Ceremony
In February 2024, the Crown Hair Care Program expanded to all pediatric and obstetric units at NewYork-Presbyterian. To mark this milestone, the Dalio Center hosted a ribbon-cutting ceremony. The event was attended by Lisa Price, founder of Carol's Daughter (a L’Oréal brand), along with senior hospital leadership, nurse leaders, and nursing teams. Over the past year, the Crown Hair Care Program has gained national attention, being showcased in multiple forums including the Black Health Connect Conference, the National Black Nurses Association Conference, and at the American Public Health Association Conference.
Additionally, in collaboration with Sesame Street, educational materials and videos on hair care featuring Gabby the puppet were made available on NewYork-Presbyterian's internal patient entertainment system. They include a short story in which Gabby reminisces about Wash Day as a little girl with tightly textured hair, as well as a sing-along titled "I Love My Hair, Feathers, & Fur," featuring guest appearances by Big Bird and Elmo.
NewYork-Presbyterian clinical team members at the Crown Hair Care Program Ribbon Cutting Ceremony with Lisa Price
In 2023, NewYork-Presbyterian supported the Trust for Public Land’s New York City Community Schoolyards Program. Since its inception, this program has transformed 232 asphalt schoolyards into bustling, green spaces with gardens, play structures, athletic facilities, outdoor classrooms, and more. The Dalio Center supported two community schoolyard projects that Trust for Public Land designed with the community, located in Jackson Heights and Bedford-Stuyvesant.
IS145Q Transformation
2
schoolyard renovations supported by the Dalio Center
34
participants across three community focus groups
In response to disparities identified in patient experience survey scores and feedback from Chinese-speaking patients, NewYork-Presbyterian collaborated with Hamilton Madison House to conduct focus groups aimed at understanding the specific needs of this community. Simultaneously, we surveyed team members and leadership through focus groups and interviews to assess the current state of rounding, food and nutrition options, translation services, and team member diversity. Clinical teams were also consulted for suggestions on how to improve the experience for Chinese-speaking patients.
Based on feedback from community members and team members we are:
NewYork-Presbyterian will continue to monitor patient feedback and make necessary improvements to enhance the patient experience. By focusing on these areas, we aim to provide more equitable, patient-centered care, ultimately leading to better health outcomes for the communities we serve.
Community Focus Group at Hamilton Madison House
In May 2024, the Dalio Center for Health Justice funded the launch of the NewYork-Presbyterian Empower program to improve postpartum health outcomes for at-risk individuals, led by Dr. Heather Lipkind and team. Dr. Lipkind is the director of Maternal-Fetal Medicine at Weill Cornell Medicine and a gynecologist-obstetrician at NewYork-Presbyterian/Weill Cornell Medical Center. In collaboration with the Weill Cornell Medicine Department of Obstetrics and Gynecology, the NewYork-Presbyterian inpatient obstetrics team and the NewYork-Presbyterian Ambulatory Care Network pharmacy team, this initiative uses remote monitoring technology to provide critical blood pressure care for individuals with chronic hypertension or hypertensive disorders of pregnancy (HDP), who are at high risk for postpartum morbidity and mortality. The program, serving 20-30% of the approximately 700 at-risk deliveries annually at the NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns, offers clinician training, enhanced patient support, and follow-up through remote care and home blood pressure treatment.
NYP Empower team: Heather Lipkind, MD and Shanika Clarke, MS, CD
86%
of participants engaged in care as of December 2024
I really appreciate the calls because they remind me to keep track of my blood pressure and health.
NYP Empower Patient
Thank you for helping me find a new primary care doctor. I have been trying to look for a new doctor, but I have been so busy with my baby.
NYP Empower Patient
I feel good knowing that when I upload my blood pressure readings they are being reviewed by my team.
NYP Empower Patient
Stroke is the fifth leading cause of death in the U.S. and a major cause of disability, especially for Black and Hispanic patients and those living in low-income areas, largely due to inadequate access to rehabilitation care. While stroke patients needing rehabilitation can receive care at specialized inpatient rehabilitation facilities, strict insurance eligibility rules often divert vulnerable groups to nursing homes instead, where recovery rates are lower.
To tackle this problem, the Dalio Center is funding Dr. Joel Stein and his team, who have created the Stroke Post-Acute Discharge Decision Support Tool. Dr. Stein is the physiatrist-in-chief at NewYork-Presbyterian, as well as professor and chair of the Department of Rehabilitation Medicine at the Columbia University Vagelos College of Physicians and Surgeons, and professor and chair of the Department of Rehabilitation Medicine at Weill Cornell Medicine. His team aims to reduce disparities in care and improve recovery outcomes by enhancing the existing decision support tool. They will do so through the incorporation of expert opinion, an assessment of its use in the clinical care setting, and an evaluation of results disaggregated by race and payor status.
Weill Cornell Medicine team member Jaidee Purino and Dr. Joel Stein in a simulated stroke patient office visit
The Dalio Center frequently collaborates with NewYork-Presbyterian’s Division of Community and Population Health to test new projects focused on improving the quality of and access to our care. These initiatives have a broad reach and help meet NewYork-Presbyterian’s commitment to improving health care outcomes and increasing access for the members of its communities in a manner that underscores collaboration and community involvement.
