The 21st Century Cures Act: Unanimously Approved Leading to Hopeful Treatment Options for International Essential Tremor Foundation Patients

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The 21st Century Cures provision, one of the International Essential Tremor Foundation's top advocacy issues, will help create incentives for pharmaceutical companies to pursue medications that currently don’t exist, are difficult to develop and costly to produce, but have the potential to improve the lives of millions of Americans living with chronic diseases and disabilities, like essential tremor, a common neurological condition affecting 10 million Americans.

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Together, we seek to advance the understanding of the functions of the brain and to reduce the burden of brain disorders through public advocacy with the Congress, the administration and with the general public.

As a member of the American Brain Coalition, one of the International Essential Tremor Foundation’s (IETF) most important advocacy issues is now on track to lead to faster, smarter treatment options for people living with essential tremor (ET), a common, life-altering neurological condition. The House Energy and Commerce Committee recently unanimously approved the nonpartisan 21st Century Cures Act 51-0. The American Brain Coalition was part of a group that advocated for the legislation approval.

This legislation will help modernize and personalize health care, encourage greater innovation, support research, and streamline the system to deliver better, faster cures to more patients. With the approval of this legislation, Congress will examine the whole process of bringing a new medication or an assistive device to the market, from the discovery to development to delivery, to determine what steps can be taken to keep scientific innovation moving forward at full speed; opening the door to faster FDA approvals for potentially ground-breaking research.

The 21st Century Cures provision will help create incentives for pharmaceutical companies to pursue medications that currently don’t exist, are difficult to develop and costly to produce, but have the potential to improve the lives of millions of Americans living with chronic diseases and disabilities. The idea behind the provision is that pharmaceutical companies will not spend millions of dollars and countless years developing unique and targeted medications for currently untreatable conditions, like ET, if there is not some way for them to recoup some of those research and development costs. The provision only covers medications that the FDA deems to be a current unmet medical need. This has the potential to lead to new drugs for conditions like ET, a condition that doesn’t have a single medication specifically designed for treatment.    

The American Brain Coalition (ABC) is a non-profit organization comprised of 85 non-profit and for-profit members that are many of the United States’ leading patient advocacy and voluntary health organizations, as well as professional neurological, psychological, and psychiatric associations. ABC and its members represent the 50 million Americans with disabling brain disorders and are a significant portion of the stakeholder community in the field of neuroscience.

“Together, we seek to advance the understanding of the functions of the brain and to reduce the burden of brain disorders through public advocacy with the Congress, the administration and with the general public," Catherine Rice, Executive Director of the IETF, said.

ET, which affects nearly 10 million people in the U.S., is the most common neurological movement disorder, but is frequently misdiagnosed as Parkinson’s disease. The condition is often characterized by rhythmic, involuntary and uncontrollable shaking of the hands and arms during movement, making daily tasks such as eating, drinking and writing difficult if not impossible. Sometimes ET can also affect the head, voice, legs and trunk. At this time there is no cure for essential tremor.

H.R. 6, the 21st Century Cures Act, was authored by full committee Chairman Fred Upton (R-MI), Oversight and Investigations Subcommittee Ranking Member DeGette, full committee Ranking Member Frank Pallone, Jr. (D-NJ), Health Subcommittee Chairman Joe Pitts (R-PA), and Health Subcommittee Ranking Member Gene Green (D-TX).

About the International Essential Tremor Foundation:
Headquartered in Lenexa, Kan., and founded in 1988, the International Essential Tremor Foundation is the leading organization in the world dedicated to those affected by essential tremor. The mission of the IETF is to fund research that will find the cause of essential tremor and lead to better treatments and a cure, increase awareness about ET, and provide educational materials, tools and support to healthcare providers, the public, and those directly affected by ET.

The IETF has distributed more than $750,000 in research grants, to fund 30 promising studies, in the search for the cause of ET. The Foundation has hosted numerous community awareness events across the U.S. to provide those affected with the basic knowledge necessary to become their own advocate when seeking treatment. And, the IETF also provides assistance to a vast network of support groups around the world. To learn more about essential tremor and the IETF mission, visit the IETF website at http://www.essentialtremor.org.

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Catherine Rice
@essentialtremor
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International Essential Tremor Foundation
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