Name: Sickle cell education bill signed by Hochul
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Sickle cell education bill signed by Hochul

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After more than a decade of work, an advocate for a statewide sickle cell detection education bill is delighted that Gov. Hochul signed it into law on Dec. 8.Merlene Smith-Sotillo, co-founder of the Sickle Cell Awareness Foundation, located at 108-03 164 Place in South Jamaica, told the Chronicle that she has fought for the bill since October 2011.Smith-Sotillo’s son, Syd Sotillo, the co-founder of SCAF, died from the hemolytic version of the disease, which causes organ failure, at age 30 in April 2012. Her daughter, Cathyann Sotillo, is also afflicted by the disease and takes the drug hydroxyurea to ameliorate the complications that come with it.
        “It’s like a hundred pounds was lifted off of me,” Smith-Sotillo said. “I’m so happy. You don’t understand how important this is.”Introduced by Assemblywoman Alicia Hyndman (D-Springfield Gardens) and state Sen. James Sanders Jr. (D-South Ozone Park) in the Legislature, the legislation calls for a health equity council to direct the state health commissioner to promote screening and educate the public regarding the disease and the benefits of early detection. The council must also consider the feasibility of a statewide public education and outreach campaign, the provision of grants to approved organizations, the compilation of data concerning sickle cell disease and dissemination of such data and the development of healthcare professional education programs, according to the Senate.“The implementation of bill A2609A marks a crucial advancement in fostering awareness of Sickle Cell Disease and bolstering early detection measures,” said a legislative assistant of the assemblywoman via email. “... Hyndman asserts that this legislation signifies a commitment to individuals currently grappling with Sickle Cell Disease, showcasing a forward-thinking approach to public health that promises positive impacts for generations to come.”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 adds.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.The day Hochul signed the bill into law was the same day that the U.S. Food &amp; Drug Administration approved Crispr, a type of genome editing technology, which can be used to treat the condition.The treatment involves getting patients’ stem cells released from the bone marrow into the blood with a drug called plerixafor. The cells are then collected and sent to a facility where Crispr will be used to snip DNA, correcting the effects of the mutation, according to The New York Times.
        “I am pleased to see that the FDA has approved the World’s First Ever Crispr technology for treating sickle cell disease, marking a significant milestone in the field of genetic medicine,” Hyndman said via email. “This groundbreaking approval opens new avenues for patients battling this debilitating condition, especially those of the Black and Brown communities. This approval offers hope for improved outcomes and a brighter future.”Smith-Sotillo was also thrilled about the technology being approved in the United States.Via her advocacy work, she knew it was already being used in programs in Uganda and England, and was praying that it would be used in the United States.“This is awesome,” Smith-Sotillo said.Hyndman and Smith-Sotillo also acknowledged the lack of accessibility to the technology.It costs $2.2 million, Smith-Sotillo said.“Who can afford that?” she asked. “Who is able to benefit from it? I just pray that everything works out.”The treatment is cost-prohibitive and unavailable to the general masses, Hyndman said. “As we make these advances, let us also make sure treatment is widely available to the general public.”Other downsides include the months it would take to collect enough stem cells; the fact there is only one gene-editing facility, in Tennessee; and that after using Crispr, technicians must do quality checks. Afterward, it will take 16 weeks for the cells to be sent to a medical facility to be infused into a patient, and before that happens a doctor must give the person intensive chemotherapy to make way for the new cells. The individual must also stay at a hospital for a month or more while the edited stem cells repopulate their marrows, and while that process is taking place, he or she will have no functioning immune system, reported The NYT.The FDA estimates those who are 12 and older and have debilitating pain will be eligible for the therapies. Insurers have to agree to paying for the treatment, doctors say they are mindful of unexpected outcomes from the technology, and there are very few medical facilities that offer the therapy, The NYT continued.Smith-Sotillo is still happy to share the news about the technology coming to the United States with her daughter.“This is still very exciting,” she said. “I’m going to tell her about this and the bill.”

After more than a decade of work, an advocate for a statewide sickle cell detection education bill is delighted that Gov. Hochul signed it into law on Dec. 8.Merlene Smith-Sotillo, co-founder of the Sickle Cell Awareness Foundation, located at 108-03 164 Place in South Jamaica, told the Chronicle that she has fought for the bill since October 2011.Smith-Sotillo’s son, Syd Sotillo, the co-founder of SCAF, died from the hemolytic version of the disease, which causes organ failure, at age 30 in April 2012. Her daughter, Cathyann Sotillo, is also afflicted by the disease and takes the drug...

Sickle cell education bill signed by Hochul

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