It is now official! Sjögren’s syndrome has its own separate listing under Social Security disability guidelines.

This change will make the process easier for Sjögren’s patients to satisfy Social Security Administration (SSA) criteria and obtain disability status. In announcing the new medical criteria, the SSA states, “Sjögren’s syndrome is distinct from other immune system disorders and…has unique aspects that the prior immune system listings did not address.” The SSA also reported that it concurred with comments it received that Sjögren’s can be functionally limiting.

Until now, patients have had to fit criteria for other related diseases, such as lupus, rheumatoid arthritis, or multiple sclerosis, because no guidelines existed specifically for Sjögren’s syndrome. In addition, and depending on their symptoms, patients had to qualify for disability under numerous different categories, including criteria for the immune system, special senses (otolaryngology and vision), musculoskeletal disorders, and neurological, respiratory, digestive, endocrine, genitourinary, hemic-lymphatic, and cardiovascular systems. Now, Sjögren’s syndrome patients only have to qualify under one set of criteria, the Guidelines for the Revised Medical Criteria for Evaluating Immune System Disorder, issued on March 18, 2008, and under specific criteria for Sjögren’s.

Long-time advocacy by the Sjögren’s Syndrome Foundation
Recognition of Sjögren’s syndrome as a disabling disease comes after years of advocacy on the part of the Sjögren’s Syndrome Foundation (SSF) and its Medical and Scientific Advisory Board (MSAB). As a result of its advocacy, the Foundation was invited to make a presentation at two policy conferences organized by the SSA. SSF MSAB Chair Frederick Vivino, MD, FACR, delivered a program on Sjögren’s and how it could be disabling at the first such conference in Philadelphia in 2003. SSF CEO Steven Taylor made a subsequent presentation before SSA officials in San Francisco. Taylor’s presentation built on the comments filed by the SSF with the agency as well as Dr. Vivino’s Philadelphia presentation.

The Foundation twice submitted recommendations for changes in the SSA guidelines after soliciting comments from its Medical and Scientific Advisory Board members. Dr. Vivino spearheaded the drive for clinical input and consensus from a team of Foundation experts, including Elaine Alexander, MD, PhD; Steven E. Carsons, MD; H. Kenneth Fisher, MD, FACP, FCCP; Gary Foulks, MD, FACS; Philip C. Fox, DDS; Stuart Kassan, MD, FACP; Ann Parke, MD; Daniel Small, MD, FACP; and Daniel J. Wallace, MD. In addition, patient and SSF volunteer Linda Karr Charles, RN, contributed much-needed expertise to the Foundation’s efforts.

Sometimes, participating in one process can lead to additional opportunities for education. Following his presentation before the SSA, Dr. Vivino was invited in 2004 to give a lecture on Sjögren’s syndrome at the national meeting in Philadelphia of the National Organization of Social Security Claimants Representatives (NOSSCR).

How is Sjögren’s syndrome now covered by disability?
The Social Security Administration guidelines define Sjögren’s syndrome (SS), list organ systems that might be involved, point out that SS can be associated with other autoimmune disorders, and discuss how the agency will determine whether a patient’s disease is disabling. SS is covered for adults under SSA listing 14.10 and for children under 114.10. Guidelines are similar for all age groups.

Sjögren’s syndrome defined:
The SSA guidelines define Sjögren’s syndrome as (Guidelines for the Revised Medical Criteria for Evaluating Immune System Disorders, page 14603):

a. General.
(i) Sjögren’s syndrome is an immune-mediated disorder of the exocrine glands. Involvement of the lacrimal and salivary glands is the hallmark feature, resulting in symptoms of dry eyes and dry mouth, and possible complications, such as corneal damage, blepharitis (eyelid inflammation), dysphagia (difficulty in swallowing), dental caries, and the inability to speak for extended periods of time. Involvement of the exocrine glands of the upper airways may result in persistent dry cough.

(ii) Many other organ systems may be involved, including musculoskeletal (arthritis, myositis), respiratory (interstitial fibrosis), gastrointestinal (dysmotility, dysphagia, involuntary weight loss), genitourinary (interstitial cystitis, renal tubular acidosis), skin (purpura, vasculitis), neurologic (central nervous system disorders, cranial and peripheral neuropathies), mental (cognitive dysfunction, poor memory), and neoplastic (lymphoma). Severe fatigue and malaise are frequently reported. Sjögren’s syndrome may be associated with other autoimmune disorders (for example, rheumatoid arthritis or SLE); usually the clinical features of the associated disorder predominate.

b. Documentation of Sjögren’s syndrome.
If you have Sjögren’s syndrome, the medical evidence will generally, but not always, show that your disease satisfies the criteria in the current ‘‘Criteria for the Classification of Sjögren’s Syndrome’’ by the American College of Rheumatology found in the most recent edition of the Primer on the Rheumatic Diseases published by the Arthritis Foundation.

Demonstration of disability:
The SSA requests proof of disability based on the following (Guidelines for the Revised Medical Criteria for Evaluating Immune System Disorders, page 14608):

A. Involvement of two or more organs/body systems, with:
  1. One of the organs/body systems involved to at least a moderate level of severity; and
  2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss).
or
B. Repeated manifestations of Sjögren’s syndrome, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:
  1. Limitation of activities of daily living.
  2. Limitation in maintaining social functioning.
  3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.

Evaluation of disability criteria:
The SSA guidelines state that all relevant information in a patient’s case record will be considered (page 14614). “Important factors we will consider when we evaluate your functioning under these listings include, but are not limited to: Your symptoms, the frequency and duration of manifestations of your immune system disorder, periods of exacerbation and remission, and the functional impact of your treatment, including the side effects of your medication.”

A patient’s symptoms must cause “extreme” limitation in one area of functioning or a “marked” limitation in two areas of functioning. Furthermore, both mental and physical functioning and side effects of treatment for one’s disease will be taken into account. The SSA also recognizes that persistent or even intermittent depression, fatigue, and/or pain might interfere with the ability to concentrate, work as quickly as expected or perform specific tasks.

For more information
The “Guidelines for the Revised Medical Criteria for Evaluating Immune System Disorders” can be found at by visiting this link or in the Federal Register, Vol. 73, No. 53, Tuesday, March 18, 2008, 20 CFR, Part 404, pages 14570-14616.