If you have cystic fibrosis, Social Security disability benefits may be available. To determine whether you are disabled by your cystic fibrosis, the Social Security Administration first considers whether your cystic fibrosis is severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process. See Winning Social Security Disability Benefits for Cystic Fibrosis by Meeting a Listing. If you meet or equal a listing because of cystic fibrosis, you are considered disabled. If your cystic fibrosis is not severe enough to equal or meet a listing, the Social Security Administration must assess your residual functional capacity (RFC) (the work you can still do, despite your cystic fibrosis), to determine whether you qualify for benefits at Step 4 and Step 5 of the Sequential Evaluation Process. See Residual Functional Capacity Assessment for Cystic Fibrosis.
What Is Cystic Fibrosis?
Cystic fibrosis is a severe genetic disease that causes production of excess mucus. It has major effects on the lungs and the digestive system. In cystic fibrosis the function of the exocrine glands is impaired. Exocrine glands secrete substances outside of the body or into body cavities. Examples include the mucous glands lining the bronchial tree, sweat glands, and glands in the pancreas that secrete digestive enzymes.
There are about 30,000 cases of cystic fibrosis in the U.S., but around 5% of the population unknowingly carries a mutated cystic fibrosis gene. The disorder principally affects whites of northern European descent, but all races can be affected.
Presently, there is no cure for cystic fibrosis. Care is mostly supportive—pulmonary hygiene to drain mucus from the lungs and prevent the onset of pneumonia, antibiotics to treat infection, replacement pancreatic enzymes, exercise, and good nutrition.
Lung Problems in Cystic Fibrosis
The lung problem in cystic fibrosis results from thick, dry bronchial mucus that cannot be adequately cleared from the airways. The excess mucus leads to coughing and sputum production sometimes with coughing up of blood (hemoptysis). Pneumonia and other lung infections are also a frequent problem. Chronic lung infections can lead to chronic obstructive lung disease.
The thick mucus needs to be removed from the lungs with frequent pulmonary hygiene, consisting of postural drainage and chest percussion. This is done by clapping with cupped hands on the front and back of the chest while the person lies with his or her head over the edge of a bed so that gravity helps clear the secretions. Mechanical devices may also be used for chest percussion.
Medications to thin mucous secretions (mucolytics) and bronchodilators to improve air flow are typical components of treatment. Additionally, an inhaled enzyme can help break down cellular material accumulating in the bronchi.
About 80% of cystic fibrosis patients die from lung disease, mostly related to infection.
Digestive Problems in Cystic Fibrosis
Thickened secretions can block digestive enzymes secreted by the pancreas. About 90% of cystic fibrosis patients have some degree of this problem. They must take pancreatic enzymes to digest food. Additionally, vitamin supplements are needed.
Thick, dry intestinal secretions can cause intestinal obstruction that requires surgery to clear. Stool softeners may help; enemas and intestinal lavage (rinsing) may be needed. Exercise is always important, to the extent that the patient can do so.
Other Problems Associated With Cystic Fibrosis
All cystic fibrosis problems are not necessarily pulmonary or digestive. Other problems can be associated with cystic fibrosis, including undescended testicles, diabetes mellitus, inguinal hernias, sinusitis, heart failure, and fibrosis of bile ducts (biliary cirrhosis). See Can I Get Social Security Disability Benefits for Diabetes?
Diagnosis of Cystic Fibrosis
The diagnosis of cystic fibrosis is made with a test called pilocarpine iontophoresis in which a sample of the person’s sweat is collected and analyzed for presence of sodium or chloride. People with cystic fibrosis have elevated levels, which is why their skin tastes salty. The diagnosis of cystic fibrosis has always been made long before a claimant files an application for disability benefits, but sometimes the Social Security Administration has to purchase the test to verify the diagnosis when a claimant’s medical records cannot be obtained.
Prognosis for Cystic Fibrosis
Despite the absence of a cure, improved treatment has steadily increased survival. Because of increased survival the Social Security Administration sees adult claimants with cystic fibrosis, as well as children. In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000.
To determine whether you are disabled at Step 3 of the Sequential Evaluation Process, the Social Security Administration will consider whether your breathing difficulties are severe enough to meet or equal the cystic fibrosis listing. The Social Security Administration has developed rules called Listing of Impairments for most common impairments. The listing for a particular impairment describes a degree of severity that the Social Security Administration presumes would prevent a person from performing substantial work. If your cystic fibrosis is severe enough to meet or equal the cystic fibrosis listing, you will be considered disabled.
The listing that applies to lung problems from cystic fibrosis is 3.04. It has 3 parts, A, B, and C.
You will meet the listing and qualify for disability benefits if you meet any part.
Digestive system problems are evaluated under the digestive system listings. You may qualify for disability benefits with a combination of pulmonary and digestive impairments even if neither alone is sufficient to meet a listing.
Meeting Social Security Administration Listing 3.04A for Cystic Fibrosis
You will meet part A of listing 3.04 if you have cystic fibrosis with an FEV1 equal to or less than the appropriate value specified in Table IV corresponding to your height without shoes.
Part A involves evaluation of the results of spirometric testing. Spirometric testing requires you to exhale into a device called a spirometer, which measures the volume of air you can inhale and exhale. FEV1 means forced expiratory volume in one second. Spirometry is the most important test for evaluating obstructive lung disease. FEV1 decreases in proportion to the severity of the lung disease. In other words, the lower your FEV1, the more severe your lung disease is.
Table IV shows the threshold values for the FEV1 that meet the listing for various heights. In reality, gender and age affect normal values but are not taken into account in part A. Since older women have somewhat lower normal predicted values for a given height than men, failure of the table to make a distinction is to the maximum advantage of older women.
Meeting Social Security Administration Listing 3.04B for Cystic Fibrosis
You will meet part B of listing 3.04 if you have cystic fibrosis and episodes of bronchitis or pneumonia or hemoptysis (coughing up blood–more than bloodstreaked sputum) or respiratory failure, requiring physician intervention, occurring at least once every 2 months or at least 6 times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes.
Not every episode counts. Episodes must be prolonged lasting one or more days and requiring intensive treatment, such as intravenous bronchodilator or antibiotic administration or prolonged inhalational bronchodilator therapy in a hospital, emergency room or equivalent setting. Therefore, to meet Listing 3.04B, you must have episodes that require a trip to the ER or treatment by a doctor to control.
Documentation of your medical treatment is the key to winning a disability claim under listing 3.04B. Documentation should include hospital, emergency facility and/or physician records indicating the dates of treatment; clinical and laboratory findings, such as the results of spirometry and arterial blood gas studies (ABGS); the treatment administered; the time period required for treatment; and your response to treatment. The medical evidence must also include information documenting your adherence to a prescribed regimen of treatment as well as a description of physical signs.
Meeting Social Security Administration Listing 3.04C for Cystic Fibrosis
You will meet part C of listing 3.04 if you have cystic fibrosis and persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy.
The purpose of part C is to document severe chronic lung disease resulting from infection. The Social Security Administration determines whether you meet the listing by considering factors such as medical history, clinical findings, symptoms, sputum cultures, imaging studies like chest X rays, or direct visualization of bronchi with bronchoscopy.
Part C requires only that the infection be persistent. It does not require any particular level of severity. Furthermore, it does not require symptoms, such as chest discomfort or malaise, although these would support the diagnosis of continuing infection, as would a persistent low-grade fever. Even mild, persistent infection implies ongoing deterioration in the lungs, although it might be slow. In fact, deteriorating pulmonary function studies, like a worsening FEV1, in the absence of obvious pneumonia support the existence of some type of chronic infection.