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Is Social Security Making it Harder for Sickle Cell Patients to Get Help?

by | Mar 7, 2024 | Social Security Disability |

The long and short answer to this question is a resounding yes, and every time the Administration updated their regulations on Sickle Cell requirements it gets worse. A recent article by Bo Erickson for CBS news is quoted as saying “Thousands of Black children with sickle cell disease struggle to access disability payments[1].” This comes as a result of the regulatory updates to the Sickle Cell listings that occurred in 2015. The requirements for children to meet the Listing 107.05 under Hemolytic anemias, including sickle cell disease, thalassemia, and their variants are as follows:

  1. Must have a documented painful (vaso-occlusive) crises requiring parenteral (intravenous or intramuscular) narcotic medication, occurring at least six times within a 12-month period with at least 30 days between crises.  OR
  2. Complications of hemolytic anemia requiring at least three hospitalizations within a 12-month period and occurring at least 30 days apart. Each hospitalization must last at least 48 hours, which can include hours in a hospital emergency department or comprehensive sickle cell disease center immediately before the hospitalization (see 107.00C2).  OR
  3. Hemoglobin measurements of 7.0 grams per deciliter (g/dL) or less, occurring at least three times within a 12-month period with at least 30 days between measurements. OR
  4. Beta thalassemia major requiring life-long RBC transfusions at least once every 6 weeks to maintain life (see 107.00C4).

These requirements put a lot of undue burden on families for medical care when you are basically telling doctors and parents to take the child to the hospital for any anemic issue or crisis. Many times these issues are handled in the practitioners office, or do not require 48 hour hospitalizations. As one of the few law firms that handle Children’s disability claims, many parents I speak to actually try to avoid having to take their child to the hospital as much as possible. Going back to Mr. Erickson’s article for CBS, this feeling is also echoed by the physicians who note the standards that Social Security has in place are out of date and probably 15-20 years behind the medical standard.

Not only are these regulations putting children in danger and at risk because they lack the financial funds in their household for care, but they are putting an undue burden on the medical community. If a child is filing for disability, this is under the Supplemental Security Income (SSI) program and most likely means the funds coming into the household are below welfare standards. Denying these children benefits, hurts the African American community, their futures, and keeps them from having Medicaid resources and funds to seek treatment and get the quality of care they need. Legislation is needed to correct these rulings and requirements. Hopefully, we will see changes to some of these outdated medical requirements with the new Social Security Commissioner, Martin O’Malley.

We here at Gardberg and Kemmerly specialize in disability claims and can help you or your child with an application for disability. If you have a claim for disability and need assistance, please call our office at 251-343-1111 for a free consultation on your VA and/or SSA claim. Gardberg & Kemmerly specializes in helping the injured and disabled in Alabama, Mississippi, Florida, and Louisiana.

[1] Thousands of Black children with sickle cell disease struggle to access disability payments – CBS News



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