Sickle cell education bill gets Council votes

Advocate who lost son to the disease is ‘excited’ by the new legislation

by Naeisha Rose Associate Editor

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 manage- ment, 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