Guest: Janet Hieshetter
Presenter: Neal Howard
Guest Bio: Janet Hieshetter serves as the Executive Director of the Dystonia Medical Research Foundation (DMRF). She joined the DMRF in November 20104. Ms. Hieshetter serves on the National Institute of Neurological Diseases and Stroke Advisory Council and also serves as the Chairman of the Board for the American Brain Coalition. She also served on the Illinois Women’s Health Task Force, Massachusetts Bone Health Task Force, Tennessee’s Task Force on Bone Health, The Texas Task Force on Women’s Health and the Pennsylvania Task Force on Women’s Health. Ms. Hieshetter is a graduate of Kalamazoo College and lives in Chicago, IL.
Segment overview: Janet Hieshetter, Executive Director of the Dystonia Medical Research Foundation (DMRF), talks about Allergan’s BOTOX® as an effective treatment for Cervical Dystonia.
Health Professional Radio – Allergan’s BOTOX
Neal Howard: Hello, welcome to the program. I’m your host Neal Howard, here on Health Professional Radio, glad that you could join us today. Our guest is Janet Hieshetter, Executive Director of the Dystonia Medical Research Foundation. She’s here to talk with us about Allergan’s Botox as an effective treatment for cervical dystonia. Welcome to the program Janet.
Jannet Hieshetter: Thank you very much.
N: Thank you. You know we’ve talked before in other segments about your researches as Executive Director of the Dystonia Medical Research Foundation and also your collaboration with the company known as Allergan Incorporated. For quite a while now botox has been used as an effective treatment for dystonia. Specifically for cervical dystonia. Could you talk to our listeners briefly about what cervical dystonia is?
J: Sure. So, cervical dystonia is a focal form of dystonia, which is a neurological movement disorder, and in cervical dystonia the result is that the positioning of the head has been changed. The muscles in the neck are pulling the head down towards the shoulder or maybe forward toward the chest, during some weird cases back and we don’t really know why and we don’t know the mechanism yet in any form of dystonia actually at this point.
N: So, there’s a lot of opportunity from misdiagnosis.
J: There is, we don’t have biomarkers that physicians would typically use in making the diagnosis, so, it’s not unusual for people to have to go from doctor to doctor to get a diagnosis accurately made. And generally, we recommend people to seek out movement disorder, neurologist such as sort of sub-specialty in neurology because those are the people who commonly recognize and treat cervical dystonia. So you know that you’re getting an expert sort of workup and treatment plan when you’re working the movement disorder neurologist.
N: Your foundation, the Dystonia Medical Research Foundation, how long has this foundation been in existence?
J: So, we are this year actually acknowledging 40 years of service to the community. It’s not something, it’s not an anniversary that we celebrate. We would much rather, there be no need for the organization to be here, but we were founded 40 years ago. And have been working to support research that will lead to a cure and being able to close our door. But because we recognize that the science moves way too slowly for their those who are waiting for answers. The DMRF is also committed to awareness, and education, advocacy and support for those waiting for those scientific answers.
N: Are the symptoms of the cervical dystonia, something that a person can immediately say, “Hey, something is wrong.” or does it persist over a period of time, and then say weeks, six months, maybe years down the line all of the sudden you have dystonia, no question.
J: Well, it presents a little differently in a different people. So for some people they might wake up and feel like they just slept funny and their neck is painful and they don’t have a mobility that they normally would have. But they just sort of dismiss it with all sort of slept in odd position and have awakened with a crick in their neck and then it gets progressively worse. For other people, it does present a more severe sort of form where their head is being pulled down towards their shoulder and it stays there and it’s in a fix position. So it’s a little bit difficult to say that it represents one way for all people, which makes I think diagnosing it from a physician’s standpoint difficult if you’ve not seen a lot of dystonia and somebody comes in with sort of a crick on their neck and say, “Well, maybe you should see a massage therapist, maybe you just slept wrong”.
N: So, you talked about your foundation being actively involved in finding a cure, obviously no cure yet, but what about the treatment once you’ve been diagnosed properly, what about the treatment for dystonia?
J: There are a number of effective treatment and I would say that about 20 years ago that the whole landscape for treatment really was changed dramatically with the introduction and approval of botox for the use of cervical dystonia patient. Up until that point, they really, the treatment were, oral medication, sedation, that kind of thing living people foggy headed and really not having any sort of quality of life. So when botox was introduced, people were able to actually have a life back in many cases. So, botox is effective for generally 12 to 14 weeks. It has to be injected into the muscles that are doing the work of pulling down your head, it’s the case of cervical dystonia. So, you’re patient see their movement disorder neurologist four times a year or so. Botox is injected, it helps to weaken that muscles by sort of interrupting the signal from the nerve and in many cases the person has relief from that muscle being pulled.
N: When many people hear botox the first thing we think of is cosmetics surgery and what not. Is this something that can be administered in a plastic surgeon’s office or do you have to be a neurologist in order to use botox for the treatment of cervical dystonia?
J: Well, botox has certainly been utilized for cosmetics purposes. But when you’re using that therapeutically, you wanna be working with a physician who is an experienced injector, because needles are used, not everybody loves getting shot, right? So, there is that issue. But you wanna make sure that you’re working with somebody who knows what muscles should be injected and how they do that to maximize the benefit that you’re gonna get from the treatment. So, we again recommend that patient’s work with a movement disorder neurologist that they have access to those physician or experienced neurologist who has done this kind of injection. So some physicians will just locate the muscles, will just feel that out and then they know where that sweet spot is and they inject at that site, keeping good records of where they injected so that when you come back in the next time and you have a conversation with your doctor about how were you the last three months. They know that, that was the good spot to inject. Others used EMG, a guided sort of injection so they inject the needle to hear the activity of the muscle and they are sort of being guided by that noise, that this muscle is very active, the one that’s really pulling and they inject there. So different physician used different techniques. We encourage patients to make sure that they are working with the physician they feel comfortable with, like they can talk with, because you know things change over time. We know stress can really exacerbate the symptoms. You wanna be able to talk to your physician about whether or not is working for you. What’s going on in your life, you might want to up the dose or lower the dose, those kind of thing. So you have a good communication with your physician.
N: About how many people are affected by cervical dystonia?
J: That’s a great question. So, we estimate that there are 300,000 people in North America who are affected by all of the dystonia. And of that maybe 50 to 75,000 are affected by cervical dystonia. But the truth is we really don’t know. And we need to do more work and identify exactly how many people are affected. We think that there are number of people out there who have either been not yet diagnosed. And you know our hope is through programs like this and other awareness suffered, we can really reach those people, so they can get treatment.
N: Do you find that maybe cost is a reason we’re not seeing more people seeking treatment for it. Is that something that cost effective or is dystonia is something that you can live with, if you’ve you know, got the gumption?
J: Well I think dystonia is, especially cervical dystonia can be incredibly painful and disabling and there are, if we talked about batch line of talks and treatment botox, treatment botox are effective for cervical dystonia. It is, you know, medical treatment in this country can be very costly. There are programs in place to help those who may need the financial assistance. I know, Allergan has a patient assistance program to assist with those, the National Organization of Rare Diseases has a assistance program for patients with cervical dystonia who may need financial assistance and the case of Blepharospasm that is covered by medicare most carriers in this country do cover batch line of toxin injections for cervical dystonia. It is approved by the Food and Drug Administration, so it is on-label use. But if people are having trouble getting their treatment covered, I encourage them to contact the foundation. We work with patients to make sure that they are able access this treatment. Because we know for many it works and we want do what we can to make sure they have access to it. And people can contact the DMRF on our website www.dystonia-foundation.org or by contact in our toll free phone number 1800-377-3978.
N: Thanks for joining us Janet. It’s been a pleasure.
J: Thank you so much Neal. Thank you.
N: You’ve been listening the Health Professional Radio. I’m your host, Neal Howard talking with Janet Hieshetter, the Executive Director of Dystonia Medical Research Foundation. Transcript and audio of this program are available at healthprofessionalradio.com.au and also hpr.fm and you can subscribe to this podcast on iTunes.