The following written comments were submitted to the Office of Disability Policy of the Social Security Administration (SSA) by IFFGD President, Ceciel T. Rooker, in response to Docket No. SSA-2017-0042 on September 23, 2019.
Thank you for your leadership at the Office of Disability Policy. The International Foundation for Gastrointestinal Disorders (IFFGD) is grateful for the opportunity to comment on the Social Security Administration’s Notice of Proposed Rulemaking revising the medical criteria for evaluating digestive disorders (Docket No. SSA–2017–0042).
The International Foundation for Gastrointestinal Disorders (IFFGD) is a registered nonprofit education and research organization dedicated to informing, assisting, and supporting people affected by gastrointestinal (GI) disorders. IFFGD works with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to broaden understanding about GI disorders, support and encourage research, and improve digestive health in adults and children.
Functional GI and motility disorders are the most common GI disorders in the general population. These disorders are classified by symptoms related to any combination of the following: motility disturbance, visceral hypersensitivity, altered mucosal and immune function, altered gut microbiota, and altered central nervous system (CNS) processing. Some examples of functional GI and motility disorders are: dyspepsia, gastroparesis, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), bowel incontinence, and cyclic vomiting syndrome.
IFFGD represents both adult and child patients from several of the communities affected by this NPRM, including those managing short bowel syndrome (SBS), malnutrition, digestive organ transplantations, esophageal stricture or stenosis, gastrointestinal hemorrhaging, and patients who require medical foods including supplemental daily enteral feeding via a gastrostomy.
Comments on Proposed Listing 5.08: Malnutrition due to any digestive disorder
With an increase in obesity rates, a malnourished individual with unintentional weight loss may not decrease to a BMI of <18kg/m2 as stated in the proposed listing 5.08. The proposed criteria of using BMI measurements to evaluate malnutrition may not be inclusive enough for our patient community. In 2015 T. Cederholm, et al. published a study where approximately 3000 European Society of Clinical Nutrition and Metabolism (ESPEN) members throughout the world graded their acceptance of valid malnutrition diagnosing criteria (1). As a result, ESPEN endorsed recommendations for increasing accuracy when diagnosing malnutrition. Without an accurate diagnosis, patients are unable to receive treatment necessary to ensure proper nutrient uptake. The ESPEN recommended Nutritional Risk Screening 2002 (NRS-2002), Mini Nutritional Assessment-Short Form (MNA-SF) and Malnutrition Universal Screening Tool (MUST) consider ranges of disease severity, recent unplanned weight loss, decreased dietary intake and other factors to determine malnutrition. Lack of nutrient intake or uptake is a result of many gastrointestinal disorders, in some cases leading to malnutrition. This article includes recommendations on measuring loss of BMI as well as other possible alternatives to ensure more accurate diagnosis of malnutrition. Please consider a more inclusive and extensive criteria for malnutrition evaluation.
Comments on Proposed Listing 5.07: Short Bowel Syndrome
We applaud the committee’s decision to expand the definition of Short Bowel Syndrome (SBS) to include patients with “any amount” of resection versus the “more than one half” as required previously. We agree that this is in line with the current research findings that patients with any amount of bowel removed will likely have nutritional needs above those in the healthy population. However, in a review by P. Jeppesen MD, PhD, it is highlighted that short bowel syndrome includes not only a range of retained intestinal length but also a range of dependency on parenteral nutrition (2). Patients with short bowel syndrome seek at least some independence from parenteral nutrition as a part of improving their quality of life. IFFGD’s patient community continually searches for ways to decrease dependency to parenteral nutrition as there is a high social burden being parenteral nutrition dependent. As a result, IFFGD proposes expanding the criteria of short bowel syndrome to support patients who are not completely parenteral nutrition dependent but will experience better quality of life if it is supplementary in some form. Additionally, medications are now available for patients with SBS to taper their dependency to parenteral nutrition. With successful therapy and tapering of medical nutrition, applicable patients may achieve independence. Requiring full dependency of daily parenteral nutrition prevents patients from retaining insurance coverage during their treatment time, making them unable to complete treatment.
1 – Cederholm, T., et al. “Diagnostic Criteria for Malnutrition – An ESPEN Consensus Statement.” Clinical Nutrition, vol. 34, no. 3, 2015, pp. 335–340., doi:10.1016/j.clnu.2015.03.001.
2 – Jeppesen, Palle B. “Spectrum of Short Bowel Syndrome in Adults.” Journal of Parenteral and Enteral Nutrition, vol. 38, no. 1_suppl, 2014, doi:10.1177/0148607114520994.