NEW Botox Spokesperson...

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Permalink Reply by beka on July 25, 2009 at 11:58pm

I must give you KUDOS for doing this !!!

beka

Permalink Reply by bkaren46 on July 27, 2009 at 8:12am

Thank You Beka for the Kudos.

Permalink Reply by noelv on July 23, 2009 at 10:25am

We have to be realistic about this. Ads and promo campaigns are directed at garnering discretionary spending and elective procedures. They can drum up a lot more business and charge full list price for their product. On the other hand, dystonia sufferers are not a selective market. We do not have a choice, we need Botox regardless. As someone who ran my own business, it would be bad marketing to associate their product with a hideous debilitating disorder. Anyone who will pay $500-1000 for cosmetic injections want to live in a happy perfect world and while we are all good hearted people, we are flawed and don't belong in a marketing campaign aimed at vain wealthy "perfect" people. That is the unfair reality.

What would I like to see? Allergan still makes a substantial profit from us. We average 1 100 unit vial a month (300 units every 3 months for me), or as much as 5 cosmetic patients every month. I'd like to see them fund a Dystonia PSA that is not associated with Botox. It should be a Dystonia awareness PSA to inform the public that we are out there and need reseach support. Our spokesperson needs to be an attractive dystonia patient who would evoke a lot of empathy and sympathy. Someone like Jenn Marie or the woman who appeared on The Doctors courtesy of Montel Williams.

What is our best option? Let's get out in public and raise their awareness in person. Let's wear Dystonia themed shirts and sweatshirts. Let's have a simultaneiousget together one afternoon in Times Square and other public sites in major across the country. It doesn't have to be a large gathering. As few as 25 with a banner will attract media attention. DMRF or we can send out press releases for the major media centers. We can do these tthings ourselves without a single spokesperson. Unity will give us the strength and power .

Permalink Reply by 40K in UK on July 23, 2009 at 1:54pm

Noely,

Don't forget that Dysport (Botox used in UK) has now entered the USA market - so its not just Allergan who has the monopoly. I foresee that Dysport will be aiming to capture a fair slice of the Allergan market, albeit for cosmetic use, through aggresive marketing. Dystonia advocates should be riding on the back of this

What I fail to understand is the simple mathematical fact that if more people are diagnosed with dystonia, then more botox will be used. It makes sense for the Botox companies to promote dystonia awareness and to set up campaigns - lets say "find the missing" and through initiatives & incentives for the medical professionals / staff / colleges/ schools / students etc.

If the estimates are correct and there are 300,000 people in the states with dystonia why is there only about 10-15% in support groups (DMRF I believe has 38,000 members - not all dystonia patients).

In the UK there is an estimated 40,000 people with dystonia and only 3,500 members total in UK Adder and the Dystonia Society. The same percentage membership applies for dystonia support groups throughout Europe. Is this apathy on the part of dystonia sufferers to join support groups, or is is simply we have many people who have dystonia who have not been diagnosed yet.

Lets for example take the worst case situation that perhaps 70-80% of people with dystonia have not been diagnosed - hey that's quite a market to go after if you are a botox company (even if it is only say 40% in reality) Are the Botox companies aware of this and if so why are they not doing something about it? Maybe they do not believe the estimates - what are these estimates based upon (let's leave this for now - this if for another discussion).

I feel the message needs to be got across to the various dystonia support societies throughout the world that there is an issue here - especially with people like us in this group. Agree we need research desparately but lets make it a priority to move the dystonia awareness.to a much higher level/priority and not just to politicians. Surely the more people that are diagnosed, the better the data on which to carry out research.

There is a beneficial knock on for all - Botox companies and researchers looking for a cure - AND MORE IMPORTANTLY for Dystonia patients.

In the curent financial situtation of the world, it is noticeable that in the UK "TV adverts slots" are being "filled out" by charities such as Heart and Cancer support groups promoting their availabilty and raising funds. Obviously advertising costs are low at present - wouldn't it be good to see Dystonia Public Information / Botox advertising? Someone should be taking advantage of these cheap deals - who has the money?

I joined WEGO Health as an activist - in reality the group (which I think is great by the way) only has 202 members with slow growth - how many are there in support groups such as NSTA, DMRF etc. With the USA and Europe populations combined (20% of the worlds population) we have an estimated 600,000 - 700,000 people with a form of dystonia.

Although they do a great job and have done so for many years, I do have issues with Major support groups (excluding Care4Dystonia) as to their effectiveness. Nevertheless I feel that we need to increase membership of these groups so they can act with strength and become more vocal. Imagine 600,000 dystonia activists under one banner / movement. We could then possibly fill public places such as Times Square

In a another WEGO discussion group I queried why ST sufferers cannot have one giant symposium with all ST support groups with their membership (plus others) attending. I fully agree Unity will give us strength and power. Although Youtube, Facebook, Myspace, Twitter and blogs are spreading awareness and have been very advantageous in getting the message out there, it is also dividing, fragmenting and weakening our strength and determination and I feel creating even more frustration. Let me expalin....

If we were a Dystonia Army we wouldn't spread out our forces (and best troops) so thinly. We would concentrate our assets, regroup, formulate a failproof plan to achieve maximum effect and attack with stength with our best troops leading. To this end, I would say we need people to join the support groups (if they haven't already) and convince these support groups from within to come together and act as one.

Basically we (on WEGO health, and individuals on Facebook Youtube, Myspace Twitter, blogs etc.) are the Dystonia Army - what we need is a dedicated and respected 5 Star General, approved by and answerable to all, with a clear defined mission.

That's my thought for the day.

Ian,

Oh by the way I responded to "Joanne" earlier on Trauma as a cause of Dystonia - can't find my reply in this group - it is in General Forum!!

Permalink Reply by bkaren46 on July 23, 2009 at 6:07pm

I spoke to someone at allergan today and I was told that we should bombard Debby Garner head of marketing and here is the phone# 800-347-4500 Everybody should call and leave her a voice mail.
Let's drive her crazy? What are other's thoughts?

I agree with Noely that Botox companies should be to promote dystonia awareness and to set up campaigns about Dystonia.

Permalink Reply by Lene on July 23, 2009 at 7:48pm

What exactly did you say bkaren on the voice mail..?? Lene

Permalink Reply by bkaren46 on July 23, 2009 at 8:07pm

Well the voice mail worked and I got an immediate response from Debby Garner.

And this is what I talked about. I mentioned that Williams was quoted in a statement on there company’s website as saying, “As a working woman and actress, I know how important it is to `look the part` in any professional setting.” And I said this is so vain. And than I asked
Are you aware that there are 300,000 estimated people in North America that Suffer with some form of Dystonia or another?????????

Why are you just creating campaign’s that are for the glamarous and luxorious and not to inform about the people who struggle with Dystonia and what our symptoms are like, and the areas dystonia affects.

I mentioned It would be nice to see a commercial describing the symptoms of Dystonia, areas it affects Etc. and advising all to talk to your doctor about treatment that they provide for Dystonia.

I asked Is this campaign (Profit Driven ? Or patient driven ???)

I said we need a dystonia awareness psa or commercial. We will be hearing her response real soon. Within the next few days or so. She really had some good insight to share, and I will give her the honor of explaining to all of us.

Permalink Reply by 40K in UK on July 24, 2009 at 2:23am

BKaren

You may find the following press release useful in getting the point across to Debby Garner.

Promoting Dystonia Awareness in the UK

http://www.dystonia.org.uk/sitemap.html

You will find a fair bit of information on the above link ("Dystonia Matters" newsletters etc.) including an initiative by the Dystonia Society to issue a press release which has been used to raise an “adjournment debate” in the UK Parliament.

Sadly, there has been no further response from our MP’s as a small matter of the expense claims scandal has overshadowed any meaningful actions and now they have closed the UK Parliament for 81 days for their summer holidays (Can You believe!).

I assume (and hope) the press release (shown in full below) will probably get more publicity through WEGO Health than it has in the UK media and press.

Isolated through ignorance

A survey among Britain’s 40,000 sufferers of dystonia – a serious neurological movement disorder causing painful muscle spasms - showed widespread ignorance about their condition among healthcare professionals and a lack of understanding amongst the public.

“It is shocking that a condition that affects so many people can be so little understood and poorly recognised by healthcare professionals on the frontline. This, combined with the lack of understanding amongst the public, only exacerbates the pain and difficulties of living with dystonia” said Philip Eckstein, Chief Executive of the Dystonia Society.

“People are left to struggle for years, often without even a diagnosis. As for treatment - which consists of injections of botulinum toxin to counter painful muscle spasms - it is patchy across the whole country.”

Labour MP and former Minister for Disabled People, the Rt Hon. Anne McGuire, has now agreed to table an adjournment debate in Parliament as a matter of urgency in order to seek a response from the Department of Health as to how this movement disorder can be better addressed by the medical service, especially in the ‘front line service’ of primary care.

Lord Macdonald of Tradeston, a patron of the Dystonia Society, said: “It is gratifying to see that awareness amongst general medical professionals has clearly grown significantly over the past decade. However for those suffering spasms of pain due to their dystonia, any delay in diagnosis and treatment is an ordeal. Members of the Society will be very heartened to know that the prospect of an Adjournment Debate and new engagement with the heath providers will improve the position for the 40,000 with dystonia”.

Dr Tom Warner, Royal Free Hospital and Medical Adviser to the Dystonia Society, said: “Dystonia is a common neurological movement disorder and yet it is often unrecognised by healthcare professionals as well as the general public. The involuntary muscle spasms can be very debilitating, painful as well as embarrassing and stigmatizing.

For these reasons it can have a very negative effect on the quality of life of an individual. In one recent study of people with dystonia, the deleterious effect on quality of life was found to be as severe as that seen in people with multiple sclerosis and Parkinson’s disease”.

The Dystonia Society survey found that for the one in 1500 who are affected by distressing neurological condition, many have become isolated within their family and community through the lack of understanding of the ignorance of their healthcare professionals.

The Dystonia Society has revealed that 74% of members who responded were either ‘very worried’ or ‘concerned’ by the lack of awareness amongst medics. “The next area of concern among our members (64%) was an alarming lack of understanding shown by the general public,” said Philip Eckstein.

The Society claims that this is the first comprehensive questionnaire ever undertaken that has exclusively questioned people with dystonia about how the condition effects them physically and emotionally.

BKaren - With reference to the "Dystonia Matters" newsletters - contents and many medical articles are by leading Neuro specialists in the UK and well worth a read - it will probably provide WEGO Health members with an idea of the dystonia state of play in the UK

I’m glad to see more UK members joining WEGO Health. Dystonia and #dystonia Awareness is a global issue and basically it appears that no matter where you live on this wonderful planet of ours - sadly the problems are the same.

Hope this helps and that you get a good result with Ms D Garner

Ian

Permalink Reply by MichelleSchwinger on July 25, 2009 at 10:24am

I think that I, too, will call Ms. Gardner on Monday. What can it hurt? I am SO SICK OF PEOPLE assuming that because I get botox it's all in the name of vanity!!!!!!!! I would never inject it cosmetically because I'm not even a fan of the medical injections! GRRRRRRR. OK, rant over. I will also call her Monday.

Permalink Reply by chyvonneb on July 25, 2009 at 2:01pm

Hi,

D. Gardner called me yesterday evening. That was a nice surprise, because I hadn't really expected a call back. She was very pleasant. She had a genuine interest in my story and my usage of Botox for Dystonia. I asked her about the possibility of publicizing Botox usage in patients who have Dystonia. She informed me that there had been a website contest for people who have Dystonia and that she loves talking to the patients, etc.

While she was nice, I didn't get the impression that she would be pushing for commercials, etc. in relation to Dystonia and Botox. She said if I had any ideas feel free to call. The idea was to get more publicity out there about Dystonia...?

So, I was happy about the call but a bit disappointed in that it didn't offer any hope for future publicity. Well, hopefully more people calling in will help to spur something.

Permalink Reply by beka on July 26, 2009 at 12:00am

uhmmm...
beka

Permalink Reply by Jodes on July 26, 2009 at 2:55pm

We might get more results working with the Allergan Product Manager for the therapuetic side of Botox, rather than the head of marketing, Debbie Gardner. Product Managers are more invested due to the need for quota attainment, as well as more focused, since they only deal with one product. I will do some checking on who that might be...feel free to investigate, too. It is often suggestions and the business plan of the Product Manager that drives the Marketing Team.

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