By ARIAMA C. LONG
New York State hosted a World Sickle Cell Day celebration on Juneteenth at Mount Sinai Hospital this year. The state’s health department highlighted recent advancements in the treatment and care of sickle cell disease and brought together health care leaders, advocates, patients, and community members to raise awareness of the disease. . “When I think about better health outcomes, we’re really talking about not just quality of life, but length of life,” said NYS Health Commissioner Dr. James McDonald in a statement. “Twenty years ago, the lifespan for someone with sickle cell might have been 20 to 30 years old. Now it’s 50 to 60 years old and I think it’s going to be much farther.”
SIckle cell disease affects more than 100,000 people in the U.S. and 20 million people worldwide, but predominantly affects Black communities as well as 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, according to the state Department of Health (DOH).
Advances in research and treatment have contributed to meaningful improvements in survival and quality of life for sickle cell patients. 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, said DOH.
“Science always aspires for the best, and aspiring for better outcomes is a noble pursuit,” said McDonald.
Treatment options for sickle cell disease continue to evolve and now include stem cell transplantation and gene therapy. Despite these gains, disparities in outcomes persist, said DOH.
“Sickle cell disease is often an invisible disability,” said sickle cell advocate Krystal Folk-Nagua in a statement. “I remember being hospitalized at least once a year for 13 years and missing up to a month or so of school each time and having to catch up to continue to move on with my grade.
“We also face challenges in the healthcare setting, because a lot of people do not see or understand the challenges that we live with every day … I have experienced doctors who would only refill my prescription and would not listen to any of my other concerns. I have felt limited by my body and did not know what to do, and this is happening despite millions of people who are affected globally by sickle cell disease.”
The state now provides newborn screening to identify babies at high risk for treatable disorders, like sickle cell disease, through the New York State Newborn Screening Program at the Wadsworth Center. The goal is to help babies with these conditions live long and healthy lives. in 1975, New York was the first state in the U.S. to implement newborn screening for sickle cell disease.
