This petition was closed on July 20, 2013. Over 2,500 people responded. The NFOSD shared the results of this petition with a group of senior and seasoned NIH members from five different NIH Institutes in mid-May 2013. It was a very productive exchange of ideas and perspectives. We wish to thank everyone that responded and for those reading this message for your support and interest.
Our goal is to collect 10,000 signatures within 90 days in order to demonstrate a collective voice in support of increased research funding on swallowing and swallowing disorders. Please share this web page with your Facebook friends, broadcast it using Twitter tweets, Google+1, your email list and everyone else you feel will be helpful. Together we will make a difference!
Swallowing disorders are a hidden malady which severely affects an estimated 15 million Americans. Swallowing disorders interfere with nutritional intake which leads to hospitalizations and life threatening outcomes such as aspiration pneumonia. These disorders are a drain on an already overburdened healthcare system and are poorly understood, under-diagnosed and, as a result, mistreated, even by experienced professionals. Out of NIH’s $31 billion dollar budget, the National Foundation of Swallowing Disorders (NFOSD) identified $4 million* in 2011 annual research grants which focused on dysphagia (the medical term for swallowing disorders). This amounts to .01% of NIH’s annual budget or about 30 cents annually for each American suffering with dysphagia.
The purpose of this petition is to present a collective voice for patients, families, friends, and professionals, to the NIH regarding the urgent need for increased research funding for this debilitating disorder. We are requesting a Trans-NIH Coordinating Committee be created to examine the research support and attention given to dysphagia. The Committee focus should include how to reduce the burden of these disorders through improved understanding of the physiologic mechanisms involved and developing new and effective treatment and prevention to reduce the burden of these disorders in the United States.
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For more details on dysphagia and this petition initiative, please read below.
Dear NIH Decision Maker:
Eating is our primary means of meeting our basic nutritional needs. To eat and drink normally, one needs to be able to swallow. Studies estimate that 15 million Americans suffer from swallowing disorders. These disorders affect people across their lifespan-from newborns to the aged. Impaired swallowing (dysphagia) accompanies many conditions, including head and neck cancer, gastroesophageal acid reflux, neurodegenerative diseases such as ALS and Parkinson’s disease, stroke, premature birth, cerebral palsy, spinal cord/brain injury, dementia, and head and neck surgery, to mention just a few.
For many people with profound swallowing problems, the only way to get nutrition and hydration is through a tube that delivers nutrients directly to the stomach. Premature infants, children, and adults who depend on a feeding tube require support and care by others, cannot feed in public, and become a tremendous burden to themselves and their families. Swallowing disorders lengthen hospital stays, complicate treatment, and cause death. The cost of treating swallowing disorders has become a tremendous societal cost and is a healthcare burden, particularly in our aging population.
Despite these healthcare concerns, funding for research directed at understanding, evaluating and treating swallowing disorders is tragically lacking. A recent analysis identified a scant $4 million (out of $31 billion dollars – .01%) in annual funding by NIH focused on dysphagia. We hypothesize that this is because swallowing disorders are hidden from public view. Many people affected by swallowing disorders are in institutions such as hospitals and nursing homes or homebound (including infants and young children), and are unable to advocate for themselves. We represent their voice.
No Center or Institute at the National Institutes of Health (NIH) includes the reduction of the impact of swallowing disorders on the American public in their 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 Diabetes and Digestive and Kidney Diseases) have funded some research at various times, none has a program aimed at addressing the burden of swallowing disorders. Thus, funding for these devastating disorders is inadequate and discernable progress within our lifetimes will be negligible.
As patients, caregivers, family members, friends, researchers, and healthcare professionals, we are signing this petition to raise dysphagia awareness and the need for research progress on the physiologic mechanisms involved in swallowing disorders. We are requesting a Trans-NIH Coordinating Committee be tasked to examine the research support and attention given to dysphagia. The Committee mission should be to reduce the burden of these disorders through prevention and treatment. We respectfully request that swallowing disorders receive a focused research effort and increased funding within the National Institutes of Health.
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*The methodology used by the NFOSD to estimate research funding follows — A spreadsheet was compiled of all active NIH grants included within the following NIH defined research/disease areas: 1) Dental Oral and Craniofacial Disease, 2) Rehabilitation, 3) Injury (total) Accidents/Adverse Effects, 4) Digestive Diseases, 5) Stoke, 6) Comparative Effective Research, 7) Nutrition, and 8) Hyperbaric Oxygen. This created a database of 14,000+ records. The records were filtered by year (2011 was chosen as it represented the most current year for which data was available). It was then filtered for the following words in the project title: 1) Dysphagia, 2) Swallowing, and 3) Xerostomia. The result was a set of projects that received $4 million in grant funding in 2011. A caveat is warranted; there are other funding areas and/or words which could be used to filter the NIH grant database. We encourage the Trans-NIH Coordinating Committee to consider this analysis and methodology in their assessment.