Four New Medical Conditions Added to Social Security Administration Compassionate Allowance List

Paper People Cut Outs Being Protected by HandsThe Social Security disability eligibility process can be long and difficult. However, the Social Security Administration (SSA) recognizes that some medical conditions are severe and that people with these conditions clearly meet Social Security disability eligibility standards. For people with these medical conditions, the Social Security disability eligibility process may be significantly easier because of the SSA’s Compassionate Allowance program.

How the Compassionate Allowance List Changes

There are many different medical conditions on the current compassionate allowance list, and this list often changes.

You can request that a medical condition be added to the Compassionate Allowance List by contacting the SSA and providing:

  • Your contact information
  • The name of the medical condition that you wanted added to the compassionate allowance list
  • A description of the medical condition
  • What diagnostic testing, physical findings, and ICD-10-CM Coding (if it is available) apply to the condition
  • A description of what happens at the beginning of the medical condition and how the medical condition progresses
  • Information about treatment for the medical condition

The SSA will review your submission, gather any necessary additional medical information, review all of the medical information, and let you know of its decision.

2019 Additions to the Compassionate Allowance List

Last year, four medical conditions were added to the SSA’s current compassionate allowance list. The conditions include:

  • CDKL5 Deficiency Disorder. In August 2019, CDKL5 deficiency disorder was added to the compassionate allowance list. CDKL5 deficiency disorder is a rare genetic mutation of the CDKL5 gene. While CDKL5 deficiency disorder can result in a wide range of medical issues, most people with this condition have epilepsy and neurodevelopmental delays. Seizures typically begin between birth and three months of age and continue through a person’s life. Many people experience daily seizures that are resistant to treatment. Currently, there is no cure for this condition.
  • Pitt-Hopkins Syndrome. Pitt-Hopkins syndrome is another rare genetic disorder that was added to the compassionate allowance list in August 2019. It occurs when there is a mutation in the TCF4 gene. People with Pitt-Hopkins syndrome have intellectual disabilities, developmental disabilities, breathing problems, epilepsy, and other medical concerns. Most people with Pitt-Hopkins syndrome are unable to speak and may have similar issues to people who have autistic spectrum disorders. As of 2020, there is no cure for this condition.
  • Primary Peritoneal Cancer. The peritoneum is a tissue that lines the abdominal cavity and your abdominal organs. Life expectancy for people with primary peritoneal cancer is one to two years. The five-year survival rate is only 26%. This condition occurs more frequently in females than in males. It was added to the compassionate allowance list in December 2019.
  • Richter Syndrome. Richter syndrome is a form of non-Hodgkin lymphoma. People with Richter syndrome have chronic lymphocytic leukemia that becomes an aggressive form of lymphoma. The condition develops in about two to ten percent of people about one and one half to five years after a chronic lymphocytic leukemia diagnosis. Currently, Richter syndrome does not respond well to chemotherapy, and most people do not survive for one full year from the time of diagnosis. Richter syndrome was added to the list of compassionate allowances in December 2019.

If you have any of these conditions, or any other cancer or medical condition on the compassionate allowances list, then you need to take action immediately to protect your rights.

Call a Social Security Disability Lawyer for Help

Even if your condition is on the compassionate allowance list, you still need to complete a Social Security disability eligibility application. Our Social Security disability lawyers can take the burden of applying off of your shoulders and allow you to concentrate on other things such as your healthcare, family, and friends.

If you live in Massachusetts, Rhode Island, or New Hampshire and you are ready to apply for Social Security disability benefits, then we encourage you to call us or start a live chat with us any time to learn more about protecting the Social Security disability benefits that you’ve earned.

 

John L. Keefe
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Founding Attorney, Massachusetts Social Security Disability Lawyer
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