Social Security Disability and Cystic Fibrosis

Cystic fibrosis (CF) is a hereditary disease that causes excessive, thick mucus in the lungs and pancreas. The mucus in the lungs increases the chances of lung infections and causes breathing difficulties, which cause some young adults with cystic fibrosis to die of pulmonary or heart failure.

Symptoms of Cystic Fibrosis

Symptoms of cystic fibrosis in the lungs include productive coughing, high blood pressure, and pulmonary hypertension. In addition, excessive mucus in the digestive tract can prevent CF patients from getting proper nutrition from their food, and they also lose minerals through their sweat. Sleep disorders, including sleep apnea, have also been shown to be common in patients with cystic fibrosis, which can affect their health negatively.

Disability Benefits for Cystic Fibrosis

As patients with CF become young adults, many have increased lung infections or difficulties breathing. The Social Security Administration (SSA) recognizes the seriousness of this condition and will automatically approve disability benefits for cystic fibrosis sufferers who have frequent lung infections or poor lung function.

To qualify for automatic approval of benefits (under the SSA's listing 3.04 for cystic fibrosis), you must have one of the following:

• Poor breathing test. Spirometry test results that show a sufficiently low FEV1, depending on your age, height, and gender. (FEV1 is how much air you can exhale in one second.)
• Exacerbations. At least three hospitalizations in the last year, of any length, occurring at least 30 days apart.
• Collapsed lung. Must be due to CF and require chest tube placement.
• Respiratory failure. Must require invasive mechanical ventilation or noninvasive ventilation with BiPAP for at least 48 hours (or 72 hours, if after surgery).
• Pulmonary hemorrhage. Must have vascular embolization to control bleeding.
• Low oxygen. Must have a SpO2 reading of 89% or below (lower for those living at high altitudes). The low oxygen must occur twice in a 12-month period, at least 30 days apart.
• Two serious exacerbations within one year (such as hemorrhage, weight loss requiring supplemental nutrition, CFRD requiring insulin, or requiring 10 days of intravenous antibiotic treatment).

Additionally, CF patients with advanced lung disease may ultimately require lung transplantation. The SSA automatically finds individuals who have a lung transplant disabled for at least three years from the date of the transplant surgery.

Qualifying Because of Doctor's Restrictions

If your medical condition doesn't meet one of the above requirements, you may still be unable to work because of restrictions on your activities. If your doctor has said that you need to take frequent rest breaks; not lift more than a certain amount of weight; avoid temperature extremes, dust, and fumes; or need to have daily or weekly percussion therapy or nebulization, this limits the types of jobs you can do. The SSA will put all of your restrictions into a residual functional capacity (RFC) assessment and then evaluate whether there is any work you can be expected to do with your limitations. If there isn't, the SSA will award you disability benefits. Learn more about how the SSA decides when you can't work due to doctor's restrictions.

Medical Evidence Required to Prove Disability Due to Cystic Fibrosis

The main way that Social Security evaluates your claim is based on your medical evidence—this includes doctors' and hospital records and laboratory tests. It could also include a questionnaire completed by your doctor or even the results of an independent examination by a doctor of Social Security's choosing.

For claims involving cystic fibrosis, Social Security will look for:

• medical history and physical examination findings, including signs and symptoms of respiratory disorders, such as dyspnea (shortness of breath), chest pain, coughing, wheezing, sputum production, hemoptysis (coughing up blood from the respiratory tract), use of accessory muscles for respiration, and tachypnea (rapid rate of breathing)
• imaging of the lungs, such as x-ray or computerized tomography
• pulmonary function tests, such as spirometry, DLCO tests, ABG tests, and pulse oximetry, and
• evidence of any use of supplemental oxygen.

Basic SSDI and SSI Eligibility

Social Security administers two disability programs: SSDI and SSI. To be eligible for SSDI benefits, you must have worked a certain number of years, depending on your age, and paid into the Social Security system. Learn more about SSDI eligibility.

For SSI benefits, you must not have too much income or assets (and the SSA will count part of your family's income and assets if you live at home). Learn more about SSI eligibility.

In addition, to qualify for disability benefits, you can't be earning more than approximately $1,600 per month from work activity.

Applying for Social Security Benefits due to Cystic Fibrosis

You can apply for Social Security disability in person at your local SSA office (after the COVID-19 pandemic ends), by calling Social Security at 800-772-1213, or online at www.ssa.gov. To complete the disability application, you'll need detailed information, including the contact information and dates of treatment for all of your medical providers, the dates of any medical tests, and the names, addresses, and dates of employment for all of your employers in the last five years.

For more information, see our article on applying for Social Security disability benefits.