Answers to questions 1 and 2. See attachment. PAIN in Sickle Cell Patients must be seriously looked at and lab numbers should be used in considering this as a COMPASSIONATE ALLOWANCE case when numbers are sufficient, as well as PRESUMPTIVE DIB CASES.
The Social Security Administration (SSA) recently updated the medical listing for Hematological/Blood Disorders in May of 2015. SSA updates the medical listings on an ongoing basis, considering information from various sources including medical experts, advocates, adjudicators, and individuals with the impairment. As part of our continuing efforts to ensure the medical listings and related medical policy remain current, we would like your feedback on the effect of treatment on determining when hematological/blood disorders are disabling. You may review the current medical listings for hematological disorders at:
Sickle cell disease (SCD) is a blood disorder, which causes a person’s red blood cells to make a sickle shape. SCD causes anemia, damage to the body’s organs, and complications such as pain crises and stroke. People with SCD have treatment options including prescribed medication, red blood cell transfusions, and stem cell transplantation (SCT). SCT is the only treatment option that may produce a cure for patients with SCD. SCT is rarely performed in adult patients with SCD because in the past it has required chemotherapy. SSA is also exploring what effect, if any, chemotherapy- free SCT may have on its hematological listings. In November of 2011, physicians at the University Of Illinois Hospital & Health Sciences System performed a study using chemotherapy-free SCT in 13 SCD adult patients. You may read more about this study and sickle cell treatment at:
Please see the issues below for your comment
Question Area 1
Background - Currently, we evaluate sickle cell disease under listing 7.05 for hemolytic anemia, and we evaluate treatment by bone marrow or stem cell transplantation under listing 7.17.
Question - Are there important advancements in medicine, technology, testing, or treatment of sickle cell disease or other hemolytic anemias not currently considered that we should consider in our listings for hematological disorders? If so, what are they?
Question Area 2
Background - Under listing 7.17, SSA considers you disabled for at least 1 year from the date you receive SCT . After 1 year, we evaluate any post-transplantation complications, and we evaluate residual impairment(s) you may have under the affected body system. Chemotherapy-free SCT requires follow up treatment called sirolimus to ensure that the patient’s body accepts the SCT. Patients may suffer the same complications as SCT as well as residual complications from follow up treatment.
Question - If a person has undergone chemotherapy-free SCT, should the person be considered disabled for one year? Or is there a different recovery period for someone who has undergone chemotherapy-free SCT and follow up treatment?
"What Is Sickle Cell." National Heart, Lung, and Blood Institute. . June-July 2012. Web. 13 Apr. 2016. http://www.nhlbi.nih.gov/health/health-topics/topics/sca.
Parmet, Sharon. "UI Health Validated Cure for Sickle Cell in Adults." 15 Sept. 2015. Web. 13 Apr. 2016. http://news.uic.edu/ui-health-validates-cure-for-sickle-cell-in-adults
“Learning About Sickle Cell Disease”. National Human Genome Research Institute. 21 Oct. 2014. Web. 13 Apr. 2016. http://www.genome.gov/page.cfm?pageID=10001219
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06-09-2016:This is in response to the questions on the hematologic listings. Sickle cell disease is a heterogenous disease. There is basically, for simplicity reasons only sickle cell disease, homozygous, sickle cell trait, heterozygous and there is sickle thalassemia. Sickle cell homozygous is a condition of severe anemia and these persons have frequent bone infarcts, esp. if in higher altitudes. The only successful ...more »
Are there important advancements in medicine, technology, testing, or treatment of sickle cell disease or other hemolytic anemias not currently considered that we should consider in our listings for hematological disorders? If so, what are they?
If a person has undergone chemotherapy-free SCT, should the person be considered disabled for one year? Or is there a different recovery period for someone who has undergone chemotherapy-free SCT and follow up treatment?