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Petition – Increase Swallowing Disorder (Dysphagia) Research Coordination within NIH

This is NOT live… it is a work in progress!

Petition: I support this petition which seeks to increase coordination and funding within the National Institutes of Health (NIH) for the diagnosis and treatment of swallowing disorders.

Please click here to sign petition.

Petition Summary

Within the National Institute of Health (NIH), we are seeking greater research transparency, visibility, management, coordination, and reporting, plus increased funding dedicated to the diagnosis and treatment of swallowing disorders. We are petitioning Congressional leadership to 1) create language, aligned with this petition’s goals, to be inserted in to a Congressional NIH committee report, and 2) to form an ongoing multi-institute NIH task force focused on swallowing disorders with responsibility to report swallowing disorder NIH activity annually to congress.

Petition Detail

Eating and drinking are our primary means of meeting our basic nutrition and hydration needs.  To eat and drink normally, one needs to be able to swallow. Disordered swallowing (dysphagia) affects people of all ages – from newborns to the aged.

In fact, it is estimated that 50% – 92% of low birth weight newborns are likely to have feeding problems during their first 5 years of life and 1 in 25 adults will be affected.  Impaired swallowing (dysphagia) is prevalent in many conditions, including (but not limited to):

Neurologic diseases

  • Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease): 86%
  • Parkinson’s disease: 35% – 87%
  • Stroke: 44% – 78%
  • Cerebral palsy: 99% pediatric, 6% adult
  • Spinal cord/brain injury
  • Dementia: 13% – 57%

 

Head and neck cancer

  • Pre-treatment: 9% – 67%
  • Post-treatment: 23% – 100%

 

Critical care and surgery after intubation

  • Cardiovascular surgery: 3% – 68%
  • General surgery/surgical intensive care: 3% – 35%
  • Medical intensive care: 35% – 62%

 

Gastroesophageal reflux disease: 6% – 50%

It is so prevalent that it would be difficult to find an American who did not know someone personally who has struggled with this disorder. Swallowing disorders lengthen hospital stays, complicate treatment, and cause death. The leading cause of death in those with Parkinson’s disease is aspiration pneumonia, largely a result of a swallowing disorder. The cost of treating swallowing disorders is a drain on our already over burdened healthcare system. As our population ages, this cost and burden will continue to grow.

Despite these healthcare concerns, funding for research directed at understanding, evaluating and treating swallowing disorders is tragically lacking. A recent analysis* identified $54 million (out of $31 billion dollars – .17%) in annual 2014 funding by NIH focused on dysphagia. This works out to just 16 cents per person per year in the US in 2014, an insignificant amount when compared to the personal and societal cost of this disorder. No Center or Institute at the National Institutes of Health (NIH) is tasked with the coordination of the existing research and funds nor are swallowing disorders included in any NIH Institute’s mission statement. While several NIH Institutes (including the National Institute on Deafness and Other Communication Disorders, National Institute on Aging, National Institute on Neurological Disorders and Stroke, National Cancer Institute, the National Institute on Child Health and Human Development, and the National Institutes of Treatment Diabetes Info and Digestive and Kidney Diseases) have funded research, none has a program aimed at strategically addressing swallowing disorders. Thus, coordination and funding for this devastating and debilitating disorder is inadequate. Without a change in how NIH coordinates and manages swallowing disorders, discernible progress within our lifetimes will be negligible.

We are requesting that language be developed and included in a Congressional NIH committee report and that a multi-Institute NIH Coordinating Committee be established and tasked to determine the appropriate level of dysphagia research across the NIH commensurate with the impact this disorder has on an already overburdened healthcare system. We respectfully request that swallowing disorders receive coordinated diagnosis and treatment research across NIH along with increased funding.

Please click here to sign petition.

 

*Funding estimate methodology

An extensive analysis, using NIH RePORTER, was used to develop this funding estimate. All years and current NIH funded project were selected. Funds spent on all projects where the words “swallowing,” “deglutition,” or “dysphagia” (note, “or” was used; not “and”) appeared in the title or body of the study were included. In doing so, this presents a best case funding scenario as not all studies where these words appear actually focus on a swallowing disorder.

 

References

Bhattacharyya N. The prevalence of dysphagia among adults in the United States. Otolaryngol Head Neck Surg. 2014;151(5):765-769.

Flowers HL, Silver FL, Fang J, Rochon E, Martino R. The incidence, co-occurrence, and predictors of dysphagia, dysarthria, and aphasia after first-ever acute ischemic stroke. J Commun Disord. 2013;46(3):238-248.

Roden DF, Altman KW. Causes of dysphagia among different age groups: a systematic review of the literature. Otolaryngol Clin North Am. 2013;46(6):965-987.

Skoretz SA, Flowers HL, Martino R. The incidence of dysphagia following endotracheal intubation. Chest. 2010;137(3):665-673.

 

Petition developed by:

Michelle Ciucci, PhD, Assistant Professor, Division of Otolaryngology-Head and Neck Surgery, University of Wisconsin School of Medicine and Public Health

Martin Brodsky, PhD, ScM, CCC-SLP, Assistant Professor, Department of Physical Medicine & Rehabilitation, Johns Hopkins University

Ed Steger, President, National Foundation of Swallowing Disorders



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