Tremor Gram – January 2017

Spring 2017 Scholarship Winners
The IETF is pleased to award four students who are affected by essential tremor with $500 scholarships for the Spring 2017 semester: Kelley Cordeiro from Seaford, NY; Alice Netting from Adelaide, South Australia; Jack Peters from Redgranite, Wisc.; and Audrey Weber from Washington, D.C.

“These four students exhibit impressive qualifications based on academic and extracurricular activities in their communities and will become outstanding, future leaders in helping create more awareness about essential tremor,” said Patrick McCartney, Executive Director of the IETF.

Read their individual stories here…


Medicare Establishes Payment Level for FUS
The Centers for Medicare and Medicaid Services (CMS) has set the institutional payment for focused ultrasound treatment for essential tremor at approximately $10,000. After two years CMS will reevaluate the payment level based on the actual costs of treatments performed during that interval.

Focused ultrasound has the potential to improve the quality of life and decrease the cost of care for many patients suffering with essential tremor. For this potential to be realized, focused ultrasound must be widely adopted as a standard of care, which requires evidence of safety and efficacy and sufficient reimbursement to allow healthcare institutions to acquire the equipment and train physicians to use it.

While the level of reimbursement currently approved by CMS is less than desired by the neurosurgical community, it is hopefully sufficient to allow adequate numbers of patients to be treated during the next two years to generate the cost data that will allow CMS to adjust the level of payment.

Focused ultrasound to treat essential tremor is the first brain disorder to be approved by the FDA and the first to be reimbursed by Medicare. These approvals serve as the predicate to treat other brain indications including tumors, epilepsy, Parkinson’s disease, and reversibly opening the blood brain barrier to enable delivery of a range of cutting-edge therapies for a variety of other neurological disorders that are in earlier stages of research and development.


21st Century Cures Act Becomes Law

President Obama signed the 21st Century Cures Act into law providing $4.8 billion in new funding for the National Institutes of Health (NIH). Of that funding, $1.6 billion is earmarked for brain diseases, including essential tremor, Alzheimer’s and Parkinson’s disease.

This legislation is designed to help modernize patient care, encourage scientific innovation, support cutting-edge research, and streamline systems so new treatments and devices can get into the hands of patients faster. With the approval of this legislation, Congress will examine the whole process of bringing a new medication or an assistive device to market from the discovery to development to delivery. They want 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 Act 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 people living with chronic diseases and disabilities. The idea behind the provision is 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.



Upcoming Events

ET Education Forum
Boca Raton, FL
March 11, 2017

ET Education Forum
Detroit, MI
April 29, 2017

ET Education Forum
Cleveland, OH
August 26, 2017

ET Education Forum
Sacramento, CA
Nov. 11, 2017

More information to come.