New York State Department of Health Celebrates Sickle Cell Advances in Honor of World Sickle Cell Day

Department Hosts Event at Mount Sinai Center for Sickle Cell Disease

Advances in Treatment Increase Life Expectancy for People Living with Sickle Cell Disease

ALBANY, N.Y. (June 16, 2026) - The New York State Department of Health today celebrated World Sickle Cell Day, observed on June 19, by hosting a press event at the Mount Sinai Center for Sickle Cell Disease, highlighting progress in the diagnosis, treatment and long-term care of sickle cell disease.

"Sickle cell disease has caused suffering and shortened lives for too long," State Health Commissioner Dr. James McDonald said. "Today we are seeing hope through advances in treatment, newborn screening and equitable access to care. Our commitment is not only to continue this progress, but to ensure that every person living with sickle cell disease in New York is met with compassion and quality medical care."

Sickle cell disease is an inherited blood disorder that affects hemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body. The condition remains a serious public health concern that disproportionately impacts the Black community and continues to create significant physical, emotional and financial burdens for individuals and families.

The event highlighted the Department's ongoing commitment to improving outcomes for people living with sickle cell disease. Efforts include expanding public awareness, strengthening newborn screening programs, advancing equitable access to high-quality care and building stronger support networks for patients and families across New York State.

"For decades, our message to patients with sickle cell disease was that we could help manage their symptoms," said Jeffrey Glassberg, MD, MA, Professor of Emergency Medicine (Hematology and Medical Oncology) at the Icahn School of Medicine at Mount Sinai, Director of the Mount Sinai Center for Sickle Cell Disease. "Today, for some patients, we can have an entirely different conversation, one about the possibility of a cure. That represents a historic shift in medicine and a source of tremendous hope for families who have waited generations for breakthroughs like these. While there is still much work to do to ensure equitable access to these advances, this is truly a moment of transformation for the sickle cell community."

"As a nurse and researcher, I see every day how important it is to provide care that addresses the whole person, including their medical, emotional, and social needs," said Charleen Jacobs-McFarlane, PhD, RN, ANP-BC, a nurse practitioner at The Mount Sinai Hospital and postdoctoral fellow whose research focuses on sickle cell maternal outcomes and reducing hospitalizations for people living with sickle cell disease and chronic pain. "It is an exciting moment in sickle cell research thanks to advances in newborn screening, comprehensive care, and new treatment options, life expectancy has increased to approximately 54 years, and the vast majority of patients now reach adulthood. While we celebrate these achievements, we must also recognize that many individuals living with sickle cell disease continue to rely on blood transfusions throughout their lives to help prevent complications and improve their quality of life. That is why blood donation remains one of the most meaningful ways New Yorkers can support this community. Every donation has the potential to make a direct difference for a patient living with sickle cell disease."

"Sickle cell disease has long been one of the most challenging inherited diseases affecting families across New York and around the world," said Brendan G. Carr, MD, MA, MS, Chief Executive Officer, Mount Sinai Health System. "We are witnessing a remarkable transformation in what is possible for patients. Advances in research, comprehensive care, and groundbreaking gene therapies are creating opportunities that did not exist even a decade ago. At Mount Sinai, we are proud to stand alongside our patients, families, community partners, and the New York State Department of Health as we work toward a future where every person living with sickle cell disease has access to the highest quality care, the latest scientific innovations, and renewed hope for a healthier future."

"For the first time in my adult life, I have medical providers and a care team who deeply understand sickle cell disease, truly listen to my needs, and treat me with dignity and compassion," Advocate Krystal Folk-Nagua said. "This has tremendously improved my treatment and quality of life."

Advances in research and treatment have contributed to meaningful improvements in survival and quality of life. Life expectancy for individuals with sickle cell disease has increased to approximately 52-54 years, compared to 39 years between 1999 and 2009 and 43 years between 2010 and 2020. Today, approximately 95 percent of individuals with the condition reach adulthood, reflecting major progress in pediatric care, early intervention and comprehensive disease management. Despite these gains, disparities in outcomes persist.

Treatment options for sickle cell disease continue to evolve and now include stem cell transplantation and gene therapy. Among these advances are two FDA-approved gene therapies for sickle cell disease, representing significant milestones in the field of genetic medicine.

The condition affects more than 100,000 people in the U.S. and 20 million people worldwide. In the U.S., most people who have sickle cell disease are Black, but it also occurs more frequently in individuals of Hispanic, Southern European, Middle Eastern or Asian Indian descent. Approximately 10% of people with sickle cell disease in the U.S. live in New York State.

The New York State Newborn Screening Program at the Wadsworth Center provides screening for sickle cell disease and 50 other, mostly genetic diseases for all babies born in New York State. Newborn screening involves a series of laboratory tests performed to identify babies at high risk for treatable disorders. The goal is to help babies with these conditions live long and healthy lives. Without timely medical intervention, these conditions can cause significant morbidity in newborns and even death. Early diagnosis and treatment for these disorders leads to better health outcomes. New York was the first state in the U.S. to implement newborn screening for sickle cell disease in 1975.

The Department urges New Yorkers to learn about blood donation because people with sickle cell disease benefit from blood transfusions.

Information about sickle cell disease can be found here.

Information about the New York State Newborn Screening Program can be found here.

Information about living with sickle cell disease can be found here.

Locations for New Yorkers to donate blood can be found here.