Raising Awareness about Essential Tremor among Consumers


The Foundation recently spoke with Rick Schallhorn, Vice President of Neurosurgery, and Xen Mendelsohn Aderka, Vice President of Marketing, for Israel-based Insightec, the company behind focused ultrasound technology for essential tremor (ET). They share their efforts to increase awareness for the focused ultrasound treatment for ET.

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Tell us about the need to better educate and raise awareness among the public regarding essential tremor.
Xen: In today’s interconnected world, we know that patients and their family members and caregivers are often proactively searching for information about their health. More and more, patients are researching medical treatments online and playing a more active role in their own healthcare. We see on our Facebook page and other social media channels that people are engaged and asking questions about non-invasive medical procedures. There is an appetite – and therefore often an unmet need – for information to help guide healthcare decisions. We see this with a wide range of health conditions including ET, painful bone metastases, and uterine fibroids.

Rick: There is often a lack of resources, and therefore a low awareness, among the general public regarding certain conditions and treatment options. ET – and focused ultrasound treatment for ET – is one such example. A recent article published in Frontiers in Neurology found that only 10 to 15 percent of 250 interviewees had ever heard of or read about ET. Results showed that not only do people lack knowledge of the disease, but misconceptions are common. For example, among participants who had heard of ET, two-thirds attributed it to incorrect causes, such as possible trauma or alcohol abuse.

For ET sufferers themselves, there are interesting data from a questionnaire administered to more than 1,000 ET patients that found that when asked what ET sufferers found lacking in their treatment, one of the top responses (16.1%) was that the current treatment (medication) was not effective enough.

Xen: We want to help give patients a voice and provide them with a roadmap toward treatment and achieving control over their healthcare decisions and their tremor. As such, we have developed a patient-centered approach to educating the public aimed first at ET patients.

Back in March, which was Essential Tremor Awareness Month, we kicked off a patient-focused campaign on social media. Our key goal was to raise awareness for the non-invasive focused ultrasound treatment option and to promote our new patient website.

How did you arrive at this patient-focused approach?
Xen: We recently held a series of focus groups with people suffering from ET to gain information on the patient and caregiver perspective. One main take-away was that patients are stuck between taking medication that often does not help, and invasive surgery with implanted pacemakers and their associated follow-up. Patients often see focused ultrasound as a non-invasive option between these two extremes.

We also learned that family members have strong influence on the patient and may urge them to get diagnosis and treatment. These findings from patients living with tremor and their caregivers led us to focus our efforts on increasing awareness of focused ultrasound treatment by educating patients (and their caregivers) of all of the treatment options available to them.

What does your consumer approach entail?
Rick: First of all, ET is a very emotional topic. As tremors worsen, people often become dependent on others and they may even be embarrassed to go out in public. Daily activities that we take for granted, eating and drinking on our own, may become almost impossible. It is important to understand that there is a huge impact on a person’s quality of life.

In a randomized clinical trial of focused ultrasound, patient ratings of their quality of life showed significant improvement at 3 months that was maintained at 12 months. Interestingly, the largest improvement was in the psychosocial domain.

Xen: First we developed a new name for the procedure, one that we felt would resonate well with patients and their families. Neuravive is the new brand name for focused ultrasound procedures in neurosurgery, starting with the ET treatment. Neura is suggestive of a neuro procedure and vive alludes to life – the quality of life that the procedure offers patients.

We then developed a new patient website for people suffering from ET, www.usa.essential-tremor.com, as well as a patient brochure, which explains the procedure in detail. These materials aim to assure patients of the efficacy and safety of the procedure.

What do you want consumers to know about the new website? What information can they find there?
Xen: The content in the patient website is focused on educating patients and their family members about all current treatment options for ET. It encourages patients to ask questions about their diagnosis and treatment options, which in turn empowers patients to make informed decisions regarding their health.

We started off by speaking with several patients with ET who had undergone focused ultrasound treatment. We asked them to tell their stories in their own words: what their lives were like living with ET, what led them to have the focused ultrasound treatment, and how their life has changed since the treatment. Personal stories help create engagement and move people to take action.
These stories became the basis for a series of animations and real-life patient testimonials, which can be found on our patient website and on YouTube.

In addition, there is a quiz for patients to do an initial evaluation to see if they may be a suitable candidate for focused ultrasound treatment. Finally, there is a form to request more information and find a treatment center near you.

What is the key challenge facing the company?
Rick: The current challenge facing Insightec now that the treatment is FDA approved is securing broad reimbursement. Before setting reimbursement, private and governmental payers compare clinical and economic data of a new medical technology to currently available treatments. In the interim, patients are required to get individual pre-approvals or to pay out-of-pocket.

Xen: Reimbursement goes hand-in-hand with awareness. We need to increase awareness with neurologists so that they know about the treatment option and can refer patients for treatment. This will increase the number of procedures being performed. We will also continue to create awareness with patients so that they ask for the procedure. This will also increase the number of procedures being performed. This push and pull holds the promise for focused ultrasound to become mainstream clinical practice.

Any other upcoming plans for consumers in 2017/2018 that you can share with our readers?
Xen: We remain very focused on increasing the number of medical centers offering focused ultrasound treatment for ET so that more patients have access to the treatment.

What is the key reward working at Insightec?
Rick: It is difficult to accurately describe the atmosphere in the MR suite after a Neuravive treatment – the excitement of the entire medical team, the pure joy of the patient and their family. It’s very rewarding.