Social Security Disability Benefits for Cystic Fibrosis

Patients suffering from severe CF will eventually get disability benefits if they have poor breathing test results or frequent exacerbations.

Cystic fibrosis (CF) is an inherited disorder that causes the mucus in a patient's lungs and pancreas to become sticky and thick. The thick mucus in the lungs makes it difficult to breathe and increases the chance for lung infections and other respiratory complications. The mucus also affects your digestive tract and prevents your body from absorbing nutrients from food. People with CF also lose large amounts of minerals through their sweat, which leads to numerous health problems. Over time, CF usually leads to permanent lung damage and disability.

Treatment for Cystic Fibrosis

Treatment for CF includes physical therapy to the chest (to help remove the thick mucus), antibiotics to avoid infection, other medications, exercise, nutritional support, and pulmonary rehabilitation. Oftentimes CF patients must be hospitalized while undergoing treatment. As medical advances are made, the prognosis for CF patients continues to improve, but most patients with CF have a shortened life span.

Can I Get Disability for My Cystic Fibrosis?

For most children with CF, the condition doesn't become disabling until sometime in adulthood, when lung disease usually begins to interfere with normal functioning.

The Social Security Administration (SSA) will automatically approve a CF patient for disability benefits if he or she meets the criteria in its disability listing for severe cystic fibrosis. Under Social Security's disability listing for cystic fibrosis, which is pretty complicated, you must have one of the following to qualify for benefits:

Poor lung function. You must have a low FEV1 value (how much air you can exhale in one second) on a spirometry test, depending on your age, height, and gender.

Hospitalizations. You must have had at least three exacerbations requiring hospitalization in the last year, occurring at least 30 days apart.

Embolization. You must have had vascular embolization to control a pulmonary hemorrhage.

Poor oxygen saturation. Your SpO2 level must have been 89% or below at least twice over the last year, at least one month apart (the required percentage is lower for those living at high altitude).

Pneumothorax. You must have had a collapsed lung due to CF that required placement of a chest tube.

Respiratory failure. You must have needed invasive mechanical ventilation or noninvasive ventilation with BiPAP for at least 48 hours (or 72 hours if it followed surgery).

Two serious exacerbations. You must have had two of the following exacerbations or complications over the past year:

  • a pulmonary exacerbation requiring 10 days of intravenous antibiotics
  • a pulmonary hemorrhage requiring hospitalization for any length of time
  • weight loss requiring tube or intravenous feeding for 90 days, and/or
  • CF-related diabetes that required daily insulin for at least 90 days.

Note that bronchiectasis, a frequent complication of CF, has its own disability listing.

    What If I Don't Qualify Under the Listing?

    If you suffer from CF but don’t meet the above requirements, you still have a chance of getting approved for benefits. The SSA will look at how your CF is affecting your ability to work. The agency will put together an "RFC," a residual functional capacity assessment, that details any work-related limitations that stem from your CF. For example, CF patients often must undergo lengthy daily treatments to control their CF, such as chest percussion therapy to drain excess fluid from the lungs or nebulizer treatments (in fact, needing daily treatments of this kind may allow you to "equal" one of the above listings).

    If you would need frequent breaks or extended time away from work during the day to undergo treatment for your CF, the SSA would likely find that this limitation precludes full-time work, and would find you disabled. In addition, because the lungs of CF patients are compromised, your RFC should state if you need to avoid temperature extremes, dust, fumes or other environmental restrictions.

    After your RFC assessment, the SSA will decide if you can perform any kind of work with your functional limitations. For this reason, it's important to ask your treating physician to provide the SSA with his or her residual functional capacity assessment, detailing your limitations. For more information, see our article on RFC assessments.

    Standard Requirements for SSDI or SSI

    All applicants for disability must meet several standard conditions: you must not be earning more than $1,220 or more per month through work (in 2019), and your inability to make more than that amount must be expected to last at least a year.

    In addition, for SSDI benefits, you must have worked a certain number of years at a job that paid Social Security taxes; for more information, see our section on SSDI eligibility.

    For SSI benefits, you must come under the income and resource limits; for more information, see our section on SSI eligibility.

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