Understanding Sickle Cell, Supporting New Yorkers Who Live With It
One of the things I have learned over many years as a physician is that treating a patient means more than understanding what is in their chart. You must also listen to the person.
I was reminded of that in June when I spoke at an event recognizing World Sickle Cell Awareness Day. I met a woman living with sickle cell disease who described her condition as an “invisible disability.” She told me about numerous hospitalizations year after year, missed days of school and the times when she felt unheard and her pain was ignored.
I have not forgotten that conversation.
Sickle cell disease can affect every part of a person’s life. But there is another challenge that can be harder to see: living with a serious chronic illness when the people around you cannot see what you are experiencing. That is something we need to take seriously.
As doctors, we spend time looking at test results, reviewing medications and making treatment decisions. Those things are necessary, but good care also means listening when a patient tells us something does not feel right, asking questions and making sure they feel respected.
That principle is part of how we approach our work on sickle cell disease at the New York State Department of Health.
Over the past several years, the Department has worked with health care providers, researchers and community partners to understand the needs of New Yorkers living with sickle cell disease and to find ways to improve care.
From 2020 through 2024, the Department partnered with NYC Health + Hospitals/Queens on a $1.25 million demonstration project funded by the U.S. Department of Health and Human Services Office of Minority Health. The project focused on increasing the use of hydroxyurea, an important treatment, yet underutilized for children with sickle cell disease.
The approach included provider education, incentives for appropriate prescribing, improved clinical documentation tools and community-based support. The Department of Health served as the evaluator.
The results were encouraging. Hydroxyurea prescriptions increased among participating providers and medication fills increased among Medicaid-enrolled children. New York City’s 2025 sickle cell report found that medication fill rates among patients seen by participating providers increased from about 60 percent to 80 percent.
Our work with researchers at the University of Michigan has given us another important perspective. Over several years, this partnership has examined the quality-of-care children with sickle cell receive, including the use of antibiotic prophylaxis, transcranial Doppler screening and hydroxyurea.
Researchers have also worked with us to improve how we identify children with sickle cell using health care data. One study compared claims-based identification with newborn screening records and found that the strongest definition used in New York Medicaid data had 94 percent sensitivity and 86 percent specificity.
The Department has also used the All-Payer Database to expand our understanding of the sickle cell population beyond Medicaid. We established a cross-department Sickle Cell Disease Coalition to bring together staff working in different areas of the Department so that our efforts are better coordinated.
In 2022, Medicaid Health Homes began allowing sickle cell disease to serve as a single qualifying condition for eligible adults and children. This change can make it easier for eligible Medicaid members living with sickle cell disease to receive coordinated care management.
Sickle cell disease is not just a diagnosis. It is a child who does not want to miss another day of school. It is a parent trying to manage another trip to the hospital. It is an adult trying to work, care for a family and live a full life while managing a disease that can be unpredictable and extremely painful.
The woman I met in June reminded me of that.
I believe listening with empathy and compassion is one of the most important things we can do for patients. When we listen, learn from the data and work together, we can continue improving care for New Yorkers living with sickle cell disease.
Dr. James McDonald, Commissioner, New York State Department of Health
