Getting Disability Benefits for PBC (Primary Biliary Cirrhosis or Cholangitis)

Primary biliary cirrhosis (PBC), now known as primary biliary cholangitis, is a chronic disease that leads to permanent liver scarring and poor liver function. Advanced biliary cirrhosis can lead to internal bleeding, swelling from fluid buildup, and life-threatening infections. While the cause of PBC isn't entirely known, doctors consider it to be an autoimmune disease. Alcohol consumption isn't thought to be a factor in developing PBC.

If symptoms from PBC keep you from working full-time for at least 12 months, you may be eligible for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), depending on specific test results in your medical record.

Symptoms and Treatment for PBC

Many people who are diagnosed with PBC don't have any outward symptoms. Your doctor may make a diagnosis after running tests for an unrelated issue. But the disorder can progress over time and eventually interfere with your ability to work.

When PBC is symptomatic, common signs and symptoms include:

• fatigue
• yellow skin and eyes (jaundice)
• upper abdominal pain
• swollen feet and ankles
• hypopigmentation of the skin, and
• fatty deposits on the skin around the eyes, or in the creases of the palms, soles, and joints.

Untreated PBC can lead to osteoporosis, high cholesterol, digestive distress, and hypothyroidism. While PBC isn't curable, it's typically managed with medications that reduce liver inflammation. (Side effects of these medications, such as diarrhea and increased itching, can also interfere with your ability to work.) In very advanced cases, some patients with PBC may require a liver transplant.

Does PBC Qualify for Disability Benefits?

Just having a simple diagnosis of primary biliary cholangitis won't, by itself, make you eligible for disability benefits. You'll need to show that you either satisfy the criteria of a listed impairment—a specific condition described in Social Security's "Blue Book" of medical disorders—or by showing that no jobs exist that you can do with your limitations (physical, mental, or both).

Getting Disability for PBC by Meeting a Listing

Social Security doesn't have a specific disability listing for PBC in its Blue Book, but it does have a listing for chronic liver disease. Listing 5.05 sets out the medical evidence required to qualify for disability automatically when you have liver diseases such as PBC. Your medical records must contain evidence of at least one of the following:

• Gastrointestinal hemorrhage. You'll need medical imaging (such as an X-ray or MRI) of serious bleeding in areas like the esophagus, stomach, or other parts of the digestive tract. Additionally, you'll need to show either that you've been hospitalized for a blood transfusion because of your hemorrhaging or that your hemorrhaging causes hemodynamic instability as indicated by fainting, pale skin, excessive sweating, and other signs of inadequate blood flow.
• Ascites or hydrothorax. These terms are used to describe a build-up of fluids in the abdomen or lungs. You'll need to have medical documentation showing ascites or hydrothorax on at least two examinations, taken within 60 days of each other, in a 12-month period.
• Peritonitis. This is a serious infection of the abdominal lining, documented with very high white blood cell counts.
• Hepatorenal syndrome. A result of kidney problems linked to liver disease, you'll need to provide lab results showing specific levels of elevated serum creatinine (a protein that's a byproduct of kidney function), oliguria (decreased urine output), or sodium retention.
• Hepatopulmonary syndrome. This is a term for breathing difficulties related to liver disease, confirmed by lab tests showing reduced blood oxygen below certain levels.
• Hepatic encephalopathy. This occurs when toxins build up in the brain due to liver disease, causing impaired cognitive function. You'll need to have had a procedure performed (a shunt) that helps blood flow from the liver, or if you haven't had a shunt, you can provide evidence of tests documenting other abnormalities. Either way, you must provide evidence of changes in your mental abilities.
• End-stage liver disease. You must show a chronic liver disease score that's consistently high (at least 20) in medical assessments.

Advanced stage PBC can require a liver transplant. If you've had a liver transplant, Social Security will automatically consider you disabled for one year from the date of the transplant under listing 5.09. After that one-year period, the agency will re-evaluate your case to see if you still have disabling limitations.

Getting Benefits for PBC With a Limited Residual Functional Capacity

If you haven't experienced any of the serious complications listed above from PBC, you most likely won't meet the level of severity required by the disability listing for chronic liver disease. But you can still qualify for disability benefits even if you don't meet (or equal) one of the listings mentioned above if you can show that your limitations rule out all full-time jobs.

Social Security will look at how your disease limits your activities to decide whether someone with your condition can be expected to do full-time work. To evaluate your abilities, the agency will examine your medical records and your daily routine to develop a residual functional capacity (RFC) for you.

What's In Your RFC?

Your RFC is a short paragraph that describes what physical and mental tasks you can and can't do at work. For instance, if your PBC causes fatigue or shortness of breath, your RFC might state that you'll need to be allowed to take unscheduled breaks during your workday. Or, if you have chronic abdominal pain, your RFC may state that you must be able to change positions frequently in a job setting.

How Does Social Security Use Your RFC?

Once Social Security has decided what physical and mental limitations to include in your RFC, the agency will review your past work history to determine if you can do any of your past jobs. If you can't return to your previous work, then the agency will see whether any jobs exist that someone with your limitations can do.

Age can affect your ability to get benefits. If you're 50 years of age or older, Social Security looks at your educational level and job skills to see if you could be expected to learn how to do other jobs. The agency does this by applying a set of guidelines called the medical-vocational grid. If you don't have transferable job skills, then depending on your age and RFC, the grid rules may require that Social Security approve your disability application.

Applicants younger than 50 typically need to show that they can't do any less demanding jobs, regardless of whether they've done them before. For example, many jobs can't accommodate the number of unscheduled breaks a person with advanced PBC may need to take in a workday. Needing to change positions too frequently at work in order to manage pain can also eliminate even simple, sit-down jobs. You can read more about which limitations can rule out all jobs in our article on getting disability when you're unable to do sedentary work.

Filing for Disability Due to PBC

You can file your application for Social Security benefits in four ways:

• File for disability online through Social Security's website.
• Complete the application over the phone at 888-772-1213, between 8 a.m. and 7 p.m., Monday through Friday. (People who are deaf or hard of hearing can call the TTY number at 800-325-0778.)
• Apply in person at your local Social Security office.
• Hire an attorney or representative to file your application for you.

For more information, check out our articles on how to apply for Social Security disability benefits and how to find a disability lawyer, attorney, or representative.

_{Updated November 10, 2023}