Sickle Cell Anemia and Social Security Disability Benefits

Learn about your options for getting Social Security disability benefits based on sickle-cell anemia.

By , Contributing Author
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Sickle cell anemia is a disorder in which the body creates red blood cells that are "sickled," which means they are shaped like crescents. Sickled cells get stuck in the blood vessels and block blood flow. Sickled cells cause hemolytic anemia, a decrease in red blood cells, because they break down more quickly than regular red blood cells.

There are several types of sickle cell anemia that can be severe, including HbSS, sickle beta zero thalassemia, HbSD, HbSE, and HbSO. Other forms of sickle cell disease (SCD), such as sickle beta plus thalassemia and HbSC, tend to cause milder symptoms. Sickle cell trait is not a form of sickle cell anemia; it occurs when an individual inherits a sickle cell gene from one parent and a normal gene from the other parent. It generally does not cause symptoms or impairments.

Disabling Symptoms of Sickle Cell Anemia

Those with sickle cell anemia suffer many symptoms, including abdominal, bone, and chest pain, difficulty catching their breath, fatigue, fever, rapid heartbeat, excessive thirst, frequent urination, and poor eyesight. The symptoms can vary greatly among those with sickle cell anemia.

In addition to constant symptoms, those with sickle cell anemia suffer episodes of more severe illnesses called crises. Sickle cell crises can vary in frequency, length, and severity. There are four different types of crises:

  • Vaso-occlusive (thrombotic) crisis. Blood flow is restricted to the organs because of blockages in the blood vessels. Can cause organ damage and is very painful.
  • Splenic sequestration crisis. Enlargement of the spleen. Causes the abdomen to become hard. Requires immediate medical attention.
  • Aplastic crisis. Decrease in red blood cells so that they cannot properly carry out their function in the body. Causes fatigue and rapid heartbeat.
  • Hemolytic crisis. Rapid decrease in red blood cells. Can cause kidney damage.

There are also many complications that are associated with sickle cell anemia. Some of the complications include stroke, gallstones, malfunctioning of the spleen, bone infections, blindness, skin ulcers, hypertension, and kidney failure.

Getting Disability Benefits for Sickle Cell Disease

Sickle cell anemia can be a serious disease with potentially disabling symptoms, but not everyone with sickle-cell anemia can qualify for disability benefits. To receive disability benefits from Social Security for sickle cell disease, you must either meet the requirement of Social Security's disability listing for sickle cell disease, have sickle cell symptoms that are considered medically equal to the criteria in the disability listing, or show that the symptoms of your sickle cell disease prevent you from being able to return to work for more than one year.

Meeting the Sickle Cell Disease Disability Listing

To meet the criteria for automatic approval for disability under the main sickle cell disease listing (listing 7.05), you must show that you have sickle cell anemia with one of the following:

  • Painful sickle cell crises requiring intravenous or intramuscular narcotic medication, at least six times in the past 12 months, with each crisis at least 30 days apart (also called vaso-occlusive or thrombotic crises).
  • Complications requiring hospitalization at least three times in the past 12 months. Each hospitalization must last 48 hours and occur at least 30 days apart. (Examples of complications include aplastic episodes, hemolytic crises, strokes, heart problems, kidney failure, liver failure, or pneumonia.)
  • Anemia that is severe and chronic, with hemoglobin measurements of 7.0 g/dL or less, measured at least three times within a 12-month period, with each measurement at least 30 days apart, or
  • Beta thalassemia major that requires life-long red blood cell transfusions at least once every six weeks.

To qualify for disability under this listing, your medical record should include the results of a test called hemoglobin electrophoresis and a recent history of your hematocrit levels. Your doctor's notes should include evidence of your crises, including the specific type of crises suffered, the symptoms suffered, and the severity, length, and frequency of the crises.

Note that this listing was updated in May 2015. The old listing for hemolytic anemias used hematocrits: the percentage of red blood cells to the total blood volume (red blood cells and plasma). The new listing uses hemoglobin levels instead, expressed in grams per deciliter (g/dl). (The normal Hb level for males is 14 to 18 g/dl; the normal Hb level for females is 12 to 16 g/dl.)

Disability applicants with SCD who don't meet the above listing could qualify under the listing for repeated complications of hematological disorders (listing 7.18). Those who have undergone transplantation could qualify under the listing for hematological disorders treated by bone marrow or stem cell transplantation (listing 7.17). Impairments caused by sickle cells can also meet other disability listings, such as the listings for congestive heart failure, stroke, kidney failure, or vision problems.

Inability to Return to Work Due to SCD Symptoms

If you don't meet the sickle cell anemia listing, or any other Social Security disability listing, you may be found disabled if you can't work due to the limiting effect of your symptoms. Social Security develops a Residual Functional Capacity (RFC) assessment for you, which includes your physical, mental, and sensory limitations, to determine if you can work.

An RFC for someone with sickle cell anemia might include limitations such as avoidance of strenuous exertion and exposure to cold. If you have a hematocrit of less than 30% due to anemia, your RFC should be for sedentary (sit-down) work. In addition, pain, fatigue, and shortness of breath may affect one's ability to do any physical work or even work that requires increased standing or walking. Those who suffer from a decrease in eyesight could be limited in the type of work they can do.

As to mental and cognitive abilities, chronic pain in the bones or joints due to sickle cell disease may make it difficult to maintain concentration throughout tasks. Crises, which are common in many people with sickle cell anemia, can cause significant fluctuations in individuals' ability to function in the workplace. And depression from reoccurring and/or chronic pain is common in sickle cell disease, which can cause problems with performance, including concentrating, keeping pace, remembering instructions, and interacting with others appropriately.

Social Security will compare your RFC, which reflects what remaining work activities you can do, to what jobs someone with your job skills, education, and age might be suited for. For information on how this works, see our section on how Social Security decides whether there are jobs you can do.

Children With Sickle Cell Disease

Children with SCD have their own listing, listing 107.05, but it is identical to the adult listing. Children who don't meet the listing can still have a disabling impairment that qualifies for SSI if they "functionally equal" the listings. Social Security's recent ruling on sickle cell disease offers information and examples on how Social Security evaluates limitations on children's functioning.

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