Beta thalassemia major, which is also known as Cooley’s anemia, is a rare, inherited, genetic blood disorder that appears in infancy or early childhood. Prognosis is poor, with the majority of children affected by the disorder not living past the age of 20.
Beta thalassemia major affects bone marrow and prevents the production of hemoglobin, resulting in chronic anemia and impaired oxygenation of body cells. The condition is inherently disabling and as such meets the medical requirements for children to receive Social Security Disability (SSD) benefits through the Supplemental Security Income (SSI) program; however, as SSI is a need-based program, there are additionally technical requirements for the program.
Symptoms and Treatments of Beta Thalassemia Major
Children with beta thalassemia present with a range of symptoms, which may include:
- Poor growth or a failure to thrive
- Developmental delays, including the delayed onset of puberty
- Pale skin and jaundice
- Enlarged organs, including the heart, liver and spleen
- Bone abnormalities, especially including facial structure
The inability of bone marrow to function properly means the primary treatment for beta thalassemia major is the transfusion of blood. Blood transfusions can address some of the major symptoms of the disease. They can however also contribute to disability because they are so consistently required and because of the common side effects and complications that arise from the therapy, including toxic build up of excess iron in the body.
Bone marrow transplants are sometimes required, but most other treatments used with beta thalassemia major are primarily symptomatic reduction therapies and supportive care. These may include:
- Chelation therapy, to reduce iron excesses in the body
- Surgical removal of the spleen or gallbladder, if necessary
- Daily folic acid and other dietary supplements
Applying for SSD with Beta Thalassemia Major
As beta thalassemia major most commonly strikes minors, and very early in childhood, the majority of disability applications filed with the diagnosis are submitted by parents on behalf of their children. Children, as they have no work history, are not eligible to receive Social Security Disability Insurance (SSDI) benefits. They may however qualify for Supplemental Security Income (SSI) benefits, if they meet both the technical and medical eligibility criteria.
SSI is a need-based program. This means that the financial resources, including income and assets of the child’s parents will be reviewed by the SSA to determine eligibility. Only those with fairly low income and assets are eligible for SSI, even if they meet the medical eligibility criteria.
With regard to medical eligibility, the SSA considers beta thalassemia an inherently disabling disease. Therefore, meeting the medical criteria for receiving disability benefits with this condition requires little more than a formal diagnosis and the documentation of receiving appropriate medical care on a consistent basis from a qualified health care practitioner.
Though the any application for SSD filed on beta thalassemia is virtually guaranteed to meet the medical eligibility criteria, and while the SSA as part of the CAL program also approves applications with this disease for expedited processing and review, you must still complete the full application process and include substantial medical records in your claim. Any missing documentation or forms will result in delays.
It is important to note that if your child receives a bone marrow transplant, immediate approval for SSD benefits (medical eligibility) is guaranteed. Your child remains eligible for a period of one year following the transplant. Continuing eligibility is reviewed one year after the transplant to determine if your child is still eligible.
Getting Help with Your Beta Thalassemia Major Disability Claim
Although most children who are diagnosed with beta thalassemia automatically meet medical eligibility criteria for receiving disability benefits, they may or may not meet technical criteria. Understanding the application and review processes can be difficult. Getting assistance with your disability claim from a Social Security advocate or attorney can remove some of the burden from your shoulders and potentially increase your chances of receiving benefits for your minor child as well.