Name: Sickle cell education bill gets Council votes
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Sickle cell education bill gets Council votes

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The City Council’s vote on an educational sickle cell disease bill last week was a long time coming for one of the legislation’s advocates, who has a daughter afflicted by the disease and lost a son to it.“It’s been crazy, it’s exciting,” Merlene Smith-Sotillo, co-founder of the Sickle Cell Awareness Foundation, told the Chronicle. “It encompasses all people who have sickle cell in New York.”Intro. 0968B, which the Council unanimously approved on Nov. 2, will amend a city code to improve health outcomes for individuals affected by the disease.
        It will accomplish that by requiring the Department of Health and Mental Hygiene, in conjunction with New York City Health + Hospitals, to create guidance to educate medical professionals and the public on the detection of the sickle cell trait through pre- and post-conception genetic screening and on the management and treatment of the disease, especially for those who are in an at-risk population.Medical professionals will also be required to include education on the benefits of recommending screenings during the family planning process and on nondiscriminatory approaches to assess patient pain, including instruction on implicit bias in the provision of pain management, according to the bill.“Today, the Council passed critical legislation to confront the racial disparities in the treatment of Sickle Cell Disease, which has for too long disproportionately devastated Black communities,” Speaker Adrienne Adams (D-Jamaica) said in a statement last Thursday. “By educating and guiding medical professionals and the public on how to detect the sickle cell trait, we are making necessary investments into life-saving preventative care.”The bill is on Mayor Adams’ desk to be signed and a City Hall official said on Monday that it will become law.Smith-Sotillo, a Jamaica resident from Trinidad and Tobago, and her husband, Molino Sotillo, are carriers of the trait, which was inherited by their daughter, Cathyann Sotillo, and son, Syd Sotillo, who died at age 30 from the disease in April 2012. She has been advocating for the bill since October 2011, which is around the time when the hemolytic version of the disease, which causes organ failure, started to make her son severely ill.Sickle cell disease is an inherited condition in which there aren’t enough healthy red blood cells to carry oxygen throughout one’s body because instead of round and flexible blood cells, they are rigid and shaped like crescent moons blocking blood flow, according to the Mayo Clinic, a nonprofit academic medical center.The disorder results in blood cells that can only survive for 30 days, as compared to the 120-day lifespan of healthy cells, the clinic added.That cell death overloads the liver and causes jaundice, which yellows the eyes, according to St. Edmund’s Eye Hospital.Cold weather causes blood vessels to narrow in the skin, hands and feet, which makes it more likely for sickle cells to get stuck and could result in a sickle cell crisis that makes an individual feel pain all over his or her body, according to Smith-Sotillo.“Treatment has improved,” Smith-Sotillo said. “We have several different medications that work.”The part of the bill she is most passionate about involves family planning.“If you know you have sickle cell trait and your partner has sickle cell trait, there is one chance in four that your kid will have the disease,” Smith-Sotillo said.
        While there are bone marrow treatments, gene therapies and drugs like hydroxyurea that help patients, those treatments don’t help everyone, and doctors need to stop having implicit bias when providing pain management in the interim until a person with the disease can find something that works for them, she said.“Medical providers need to be educated and they need to stop telling patients they are drug-seeking,” Smith-Sotillo said. “There is not a cure for sickle cell.”The National Heart, Lung and Blood Institute said that a bone marrow transplant is the only cure, but only for some patients, and after an early diagnosis a healthcare provider may recommend medicines or transfusions to manage complications.“Most medical providers do not understand how to treat our patients,” said Smith-Sotillo, who is also the president of the foundation and acts as a patient advocate for those who have the disease. “Once they are educated, they will do a better job and patients will get the care that they really need.”Smith-Sotillo said her daughter, 53, is excited about the bill too, and she hopes her son, who was the other co-founder of the SCAF, would be proud.“He would have been really excited because he was a medical doctor,” she said.Smith-Sotillo is thankful of Councilwoman Mercedes Narcisse (D-Brooklyn), the lead sponsor of the bill.“Sickle cell disease affects thousands of New Yorkers, and Int. 968B represents our commitment to ensuring that every individual has access to the best possible care,” said Narcisse said in a statement. “By providing our medical professionals with the tools and education they need, and by raising awareness in our communities about the importance of early detection, we are forging a path towards better health outcomes. Every New Yorker, regardless of their background, deserves unbiased and informed medical care, and passage of this bill is a significant step towards that goal.”In 2019, there were 6,145 hospitalizations for sickle cell disease in city hospitals, according to state data provided by the city Department of Health. More recent figures were not available.“Guidance, education and detection can make a world of difference,” said a DOH spokeswoman. “... we were proud to work with the Council on this bill and are thrilled to see it pass.”The SCAF is located at 108-03 164 Place in South Jamaica. For more information on the disease or the foundation, visit scafcorpint.org.In 2022, Smith-Sotillo teamed up with the New York Blood Center to provide free sickle cell testing at select drives throughout the city, including Queens.The New York Blood Center thanked the Council for passing a historic bill that will raise awareness and make testing more accessible for an often-overlooked disease.“We thank the City Council for their support as well as the sickle cell advocates who fought for this bill’s passage,” Andrea Cefarelli, senior vice president at the NYBC, said in a statement. “From our leading research team focused on sickle cell disease to our donor specialists who collect blood for treatment, New York Blood Center is committed to preventing and treating this disease.”NYBC’s leading research in sickle cell disease focuses on preventing and treating complications, including pain episodes and tissue injury, and developing novel strategies to help cure the disease through stem cell transplantation and gene therapy, according to the organization.

The City Council’s vote on an educational sickle cell disease bill last week was a long time coming for one of the legislation’s advocates, who has a daughter afflicted by the disease and lost a son to it.“It’s been crazy, it’s exciting,” Merlene Smith-Sotillo, co-founder of the Sickle Cell Awareness Foundation, told the Chronicle. “It encompasses all people who have sickle cell in New York.”Intro. 0968B, which the Council unanimously approved on Nov. 2, will amend a city code to improve health outcomes for individuals affected by the disease.
        It will accomplish that by requiring...

Sickle cell education bill gets Council votes

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