Getting Disability Benefits for Cystic Fibrosis

Cystic fibrosis is a hereditary disease that causes excess mucus to build up in the lungs, resulting in breathing difficulties and an increased likelihood of infections. The thick mucus can affect the digestive tract as well, blocking absorption of nutrients in the small intestine. Cystic fibrosis is usually diagnosed in newborns, but the disorder is progressive and can cause respiratory symptoms in adults which may affect their ability to work on a regular basis.

If you’re unable to work full-time for at least one year due to cystic fibrosis, you may qualify for Social Security disability benefits. Before you submit your application, it’s helpful to become familiar with the evidentiary requirements you’ll need to be considered disabled due to cystic fibrosis and increases your chances of a successful claim.

When Is Cystic Fibrosis a Disability?

The Social Security Administration (SSA) awards disability benefits to people who have a medically determinable impairment that keeps them from engaging in substantial gainful activity for twelve months or longer. You can do this in one of two ways—by meeting the requirements of a Blue Book listing or by showing that your functional limitations rule out all full-time jobs.

Getting Disability by Meeting the Listing for Cystic Fibrosis

Cystic fibrosis is one of the Blue Book “listed impairments,” a category of medical conditions that the SSA finds especially serious. If your medical records show exceptionally limited lung functioning on certain specific test results, you may qualify for disability benefits automatically without having to show that no jobs exist that you can do.

The SSA evaluates cystic fibrosis claims under listing 3.04. You can meet the requirements of listing 3.04 if you have medical documentation of one of the following:

• spirometry (breathing) test results that show a sufficiently low FEV₁ value depending on your age, height, and gender
• exacerbation or complications of cystic fibrosis that result in at least three hospitalizations in the last year, occurring at least 30 days apart
• collapsed lung, due to cystic fibrosis, requiring a chest tube placement
• respiratory failure requiring invasive mechanical ventilation, noninvasive ventilation with BiPAP, or a combination of both, for at least 48 hours (72 hours if after surgery)
• pulmonary hemorrhage (blood in the lungs) requiring vascular embolization
• chronic lack of oxygen in the blood, as demonstrated by a SpO2 reading of 89% or below (lower for those living at high altitudes), occurring at least two times, 30 days apart, in a 12-month period, or
• two very serious exacerbations (defined as hemorrhage requiring hospitalization, weight loss requiring supplemental nutrition for 90 days, cystic fibrosis related diabetes requiring daily insulin for 90 days, or anything else requiring 10 days of intravenous antibiotic treatment) both of which occurred within a 12-month period.

Additionally, cystic fibrosis patients with advanced lung disease may ultimately require lung transplantation. Under listing 3.11, the SSA automatically finds individuals who have a lung transplant disabled for at least three years from the date of the transplant surgery.

Getting Disability if Cystic Fibrosis Keeps You From Working

The medical requirements to get disability automatically under listing 3.04 are very complex, and only the most severe cases of cystic fibrosis are likely to meet the criteria. But you can still qualify for benefits even if you don’t exactly meet the strict requirements of the cystic fibrosis listing as long as you have a residual functional capacity (RFC) that rules out all work.

Your RFC is a description of what you can and can’t do in a work environment despite symptoms or complications from cystic fibrosis. Your RFC may contain exertional limitations on how much weight you can lift or how long you can walk for, as well as non-exertional limitations such as needing to avoid temperature extremes, dust, and fumes. If your combined exertional and non-exertional limitations result in no jobs being available that you can do, you’re disabled.

For applicants younger than 50, this generally means that the combined limitations in your RFC have to rule out even unskilled, sedentary work. (Think a simple desk job or bench assembler position.) If you’re 50 years of age or older and you can’t go back to your past work with your current RFC, you may have an easier time qualifying for disability benefits thanks to a special set of rules known as the “medical-vocational grid.”

Medical Evidence You’ll Need to Get Disability for Cystic Fibrosis

The main way that the SSA evaluates your claim is by reviewing your medical evidence, so make sure to let the agency know the names, contact information, and treatment dates for any doctors you’ve seen. For claims involving cystic fibrosis, Social Security will look for:

• progress notes from your physician that contain observations of dyspnea (shortness of breath), chest pain, coughing, wheezing, tachypnea (rapid breathing), and other signs of respiratory distress
• objective medical imaging (X-ray, CT scan, or MRI) of your chest
• spirometry results (such as DLCO tests, ABG tests, and pulse oximetry)
• hospital admission and discharge summaries, and
• evidence of any use of supplemental oxygen.

Consider asking your doctor for a medical source statement outlining your treatment history, functional limitations, and the ways in which you might meet a listing (if relevant). The SSA values opinions from medical providers who’ve seen you for a long time and can provide insight into your condition.

Disability Benefit Amounts for Cystic Fibrosis

Social Security doesn't award benefits based on the type of medical condition you have, so it won’t matter if you qualify for disability due to hypothyroidism, hyperthyroidism, or another disorder entirely. Rather, the amount you'll receive if you're approved depends on whether you qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

Eligibility for SSDI is based on your employment history and the amount of work credits you’ve accumulated, while SSI is a needs-based benefit subject to income and asset limits. You can learn more about these programs—and calculate your estimated benefit amount— in our article on SSDI and SSI monthly check amounts.

Applying for Social Security Benefits due to Cystic Fibrosis

You can file for disability in person at your local Social Security office, by calling the SSA at 800-772-1213, or online at www.ssa.gov. To complete the 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, check out our step-by-step guide to applying for SSDI and SSI benefits.)

What If I Don’t Qualify for Disability?

Few people are awarded disability benefits on their first try, but you can appeal the denial—preferably with help from an experienced disability attorney or advocate. A lawyer can help you gather medical evidence, handle communications with the SSA, and represent you at a disability hearing.

If the cost of a lawyer is a concern, it might help to know that disability attorneys work on contingency (meaning they get paid only if you win) and many offer free consultations, so there’s little risk in asking around to find a lawyer you like.