On Tuesday, February 26, a group of patients and physicians convened on Capitol Hill to educate lawmakers and staff about the value of focused ultrasound therapy. Organized by the Medical Imaging & Technology Alliance (MITA) with input from the Foundation, this “fly-in” event was an opportunity for decision makers in Washington, DC, to learn more about focused ultrasound and hear directly from those who are benefitting from the technology.
The event largely focused on those indications that are already approved by the US Food and Drug Administration (FDA), including essential tremor, Parkinson’s disease,* and prostate conditions. Six patients representing these different disease categories shared their personal stories at more than 20 separate meetings, while a number of physicians and industry leaders were on hand to share why they are passionate about focused ultrasound.
“The fly-in was a great opportunity to educate policymakers about the value and potential of focused ultrasound,” said the Foundation’s Chief Scientific Officer, Jessica Foley, PhD. “My hope is that we are on our way to building a group of Congressional champions who can help us in the future to breakdown some of the key barriers to widespread accessibility for focused ultrasound treatments so more patients can benefit more quickly.”
This fly-in event is the latest product of a partnership between the Foundation and MITA. In April 2018, the two organizations formed a working group with the goal of raising awareness of focused ultrasound technology among policymakers, payors, and medical specialty societies.
“This event was an invaluable opportunity to discuss the benefits of focused ultrasound therapy and the positive impact companies like SonaCare have on their local markets with the relevant Senate and Congressional staff,” said Mark Carol, MD, Chief Executive Officer and President of Sonacare Medical and Chairman of the Working Group. “Having patients also tell their stories of how focused ultrasound has changed their life infused the meetings with a sense of urgency in making this technology available to the countless others who are suffering.”
One such patient was Kyle, a home designer and home builder from Texas whose essential tremor symptoms began at just six years of age. Nearly 30 years later, Kyle underwent focused ultrasound treatment at the University of Maryland. He joined the group in Washington to share his story.
“I felt very encouraged by the fly-in because it was clear that lawmakers were listening to our stories and understood how much of an impact focused ultrasound has had on my life,” explained Kyle. “I felt fortunate to be there to advocate on behalf of so many more patients who don’t have access to this treatment either due to their location or financial means.”
Another patient, Kimberly, participated in a focused ultrasound clinical trial at the University of Maryland to relieve her dyskinesia – of involuntary movements – brought on by Parkinson’s disease. See a video of Kimberly before and after her treatment.
“I participated in the fly-in because I believe so strongly in focused ultrasound,” said Kimberly. “I want to thank the representatives for taking the time to listen to us, and I feel confident that our efforts helped to educate many more people about this technology and that it can offer so much hope.”
Foley and Carol also co-authored an op-ed entitled “Better Treatment Options Exist – Why Don’t We Use Them?” to coordinate with our meetings in Washington, DC. The article was published by The Hill.
*In December 2018, the FDA approved focused ultrasound therapy for a specific type of the disease, called tremor-dominant Parkinson’s disease. There is a clinical trial ongoing for Parkinson’s dyskinesia which is intended to collect data needed to apply for FDA approval.