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Usher Syndrome Report Language Development and Progress

The inclusion of specific report language in appropriations bills that fund the National Institutes of Health is essential to getting Usher syndrome research the funding that it needs from the federal government. Over the years, the Usher Syndrome Coalition has done a lot to make sure this happens.

2016

Most recently, in March 2016, the Usher Syndrome Coalition put forth language for fiscal year 2017. The following language has been included in the Fiscal Year 2017 Labor, Health and Human Services, Education (LHHS) bills from the Senate and House:

FY2017 Senate LHHS Appropriations Bill Report Language

National Institutes of Health

National Eye Institute (page 97)

Usher Syndrome - The Committee continues to urge the prioritization of Usher syndrome research at NEI. The Committee requests an update on NEI and NIDCD basic, clinical, and translational research that will lead to additional treatment options and improved patient outcomes for individuals with Usher syndrome. The update should include a description of the criteria used by NIH to evaluate grant submissions to ensure the prioritization of those that accelerate human treatment options that would benefit individuals with Usher syndrome.

National Institute on Deafness and Other Communication Disorders (page 100)

Usher Syndrome.—The Committee continues to encourage the NIDCD to prioritize Usher syndrome research. The Committee requests an update on NEI and NIDCD basic, clinical, and translational research that will lead to additional treatment options and improved patient outcomes for individuals with Usher syndrome. The update should include a description of the criteria used by NIH to evaluate grant submissions to ensure that prioritization of those that accelerate human treatment options that would benefit individuals with Usher syndrome.

FY2017 House LHHS Appropriations Bill Report Language

National Institutes of Health

Office of the Director (page 77)

Usher Syndrome.—The Committee continues to urge NIH to prioritize Usher syndrome research at NEI and NIDCD. The Committee requests an update in the fiscal year 2018 budget request on steps NIH has taken to date and future plans to accelerate treatment options and improve patient outcomes.


2015

FY2016 House LHHS Appropriations Bill

Work on language for fiscal year 2016 helped to secure the following language on page 80 of the House FY 2016 LHHS Appropriations Bill, outlining the NIH Office of the Director:

Usher Syndrome.--The Committee continues to encourage support for research activities to prevent and correct the health related issues of Usher Syndrome. The Committee requests an update in the fiscal year 2017 budget request on the planned and on-going activities related to this syndrome. The update should address the funding level and manner in which the various ICs coordinate on common goals and objectives.

FY2016 Labor, Health and Human Services, and Education (LHHS) funding bills

In June of 2015, the Coalition incorporated language into the Senate and House FY2016 Labor, Health and Human Services, and Education (LHHS) funding bills. The report language is as follows:

Under the National Eye Institute section in the Senate LHHS Report (page 96), the language reads:

Usher Syndrome.-- The Committee urges NEI to continue to prioritize research on Usher syndrome, the leading cause of deaf-blindness.

Under the Office of the Director section (page 109-110), the language reads:

Usher Syndrome.-- As the most common cause of combined deafness and blindness, Usher syndrome is an important research area for multiple NIH Institutes. The Committee commends NIH for including Usher syndrome on the Estimates of Funding for Various Research, Condition, and Disease Categories list to track the annual support level of this rare disease. The Committee urges NIH to prioritize Usher syndrome research at NIDCD and NEI. The Committee requests an update in the fiscal year 2017 CJ on the planned and update should also include a timeline and deliverables that will be used to evaluate the progress made towards viable treatments for those with Usher syndrome.

Notable Happenings in 2015

The House and Senate also proposed a $1.1 and $2 Billion funding increases to NIH, respectively. The funding increase of $2 billion was signed by the president in December 2015. New language was also included in the FY2016 Senate LHHS Appropriations Bill.

Additionally, Usher syndrome was added to the NIH list of categorical spending. For a long time there was no way of knowing how much money NIH invested in Usher syndrome research. Through the efforts of the Usher Syndrome Coalition and folks like you, the Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) can be viewed as a result of Usher syndrome being added to the NIH categorical spending list. 


2014

Omnibus Spending Bill: signed January 17th

The Usher Syndrome Coalition made an effort to push for report language that would encourage the NIH to allocate more funding toward Usher syndrome in the 2014 Omnibus Spending Bill. The language reads as follows:

Usher Syndrome. - The agreement supports research activities to prevent and correct the health related issues of Usher Syndrome. An update is requested in the fiscal year 2015 congressional budget request on the planned and on-going activities related to this syndrome. The update should address the funding level and manner in which the various ICs coordinate.

Senate FY2015 Labor, Health and Human Services, and Education (LHHS) funding bill: passed June 10th

The language outlined in the LHHS FY2015 funding bill allocated money to Institutes within the National Institute of Health (NIH) that help with aspects of Usher syndrome such as vision and hearing issues. Report language regarding the National Eye Institute and the National Institute on Deafness and Other Hearing Disorders helped to secure this funding. Their report language is below.

National Eye Institute 

Usher Syndrome. - The Committee urges NEI to put a higher priority on Usher syndrome, the leading cause of deaf-blindness.

National Institute on Deafness and Other Communication Disorders

Usher Syndrome.- The Committee supports research into the prevention and treatment of Usher Syndrome, including research that will lead to improved genetic counseling, early diagnosis, and eventually expanded treatment options for individuals suffering from severe hearing and vision loss. The Committee requests an update in the fiscal year 2016 CJ on the planned and on-going activities related to this syndrome, including the manner in which various ICs coordinate on common goals and objectives.

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