Epilepsy Ottawa-Carleton

[epileric]

I just recently got interested in the Ottawa-Carleton epilepsy foundation in Ottawa ON in Canada.

So far they've been constantly proving themselves as a rather useless organization. The first event I went to was to hear a neurologist speak. He didn't show but I got an e-mail a few days later with a beautiful apology saying he would re-schedule in 3 months & that I would be notified by e-mail beforehand.

Well about 3 months later I heard nothing so I phoned them to see when he was speaking, apparently he had already spoken the previous evening. I was very upset to have missed it after waiting so long.

Of course I got another beautiful apology but the person apologizing was proud to tell me that they had a new sponsor- it was a pharmaceutical company called UCB pharmaceuticals. She told me they even refer to themselves as "The Epilepsy Company". I checked Epilepsy-Ottawa Carletons (EOC) website & there was a link to UCB pharmaceuticals & the title "the epilepsy company" but when I went to UCB's site nowhere was that title or claim used. I did point this out to the people at EOC and the next time I checked their site the ad was still there but when clicking on their UCB banner all I got was a pop-up of a larger UCB banner rather than a link to their site.

Also, this company was sending over an "epilepsy advocate" who used their AED's and will speak to us. I told them I didn't need to hear an ad for them & they said that they were guaranteed it wouldn't be but she also said she didn't know what he would talk about. She did e-mail me a link to a site that briefly describes his experience but at the bottom (in bigger letters & brighter colour) is a link to an ad for Vimpat

Now I personally have a problem with them being sponsored by a pharmaceutical company, not because I have any issues with pharmaceutical companies themselves but because their best interests are not necessarily mine or that of EOC. EOC claims that their mission is

Epilepsy Ottawa-Carleton’s three key objectives are to provide direct support services for people with epilepsy and their families; to provide public awareness and community education services; and, to provide support for volunteer fund raising.

I feel that conflicts with the needs of a pharmaceutical company as not all therapies for epilepsy are pharmaceutical, let alone the specific pharmaceuticals dealt with by this company.

I am going to hear this guy speak but I will be bringing up my discomfort with being sponsored by a pharmaceutical company & if the speaker does too much promotion I will let him & the organization know how I feel. I would like some input though on what everyone else thinks is the best & most productive way to confront them and why. Any input is appreciated.

 

[Nakamova]

Sigh. It's a shame the organization is so lame. Let us know how the presentation goes Eric. And bring your Banhammer so they know you mean business.

 

[epileric]

bring your Banhammer so they know you mean business.

LOL. I most definitely will. I got an e-mail today saying he will be making his presentation on the evening of March 7. I promise to let everyone know how it goes.

If anyone has any idea what is the best way to deal with such issues your input is still appreciated.

 

[Nakamova]

I checked out their website. They market Keppra and Vimpat, so it's likely that's what the "advocate's spiel will cover. If I were there I would grill him! They say they are "aspiring to be a patient-centric biopharma leader." What does that mean exactly? Does that mean they will make drug prices low or free in some cases? (And is the advocate being paid for his advocacy?). Do they have a way for patients to report long-term and ongoing side effects of their meds? (It seems to me that when a drug goes out on the market, the recording of side effects -- including long-term ones -- stops.). Ask what the downsides of the meds are, and see if he is honest about them.

Or not. You may not want to spend your energy that way. It may not be the worst thing in the world for him to address the group, but they should try and make sure it isn't too one-sided. I would think that there are much better ways for the Foundation to support people with epilepsy. Maybe after the rep is gone you can suggest other speakers -- anyone in the neurofeedback community? More neurologists? Dialogues (rather than presentations) with first responders?

 

[Endless]

I can't wait to hear what he has to say. (she says, sniffing the fishy smell in the air)

 

[epileric]

Just got back from the presentation

The person giving the presentation was quite nice. The drug company sent him as an "epilepsy advocate". I've never heard of that sort of thing before but he explained that it his function was to support people who have just discovered they have epilepsy or their friends & family.

His name was Tim Tilt & he was sent up from San Antonio, Texas to give his half-hour story. I find it hard to accept that a company would spend that much money to send someone so far to talk for a just half hour without any ulterior motive.

He didn't mention UCB except to thank them at the beginning & even he referred to them as "the drug company". I know there was at least one other person who was questioning why he was here because she made a point of asking him who he was accountable to. "Good question" was all I could think.

It was rather useless since everybody in the audience has had their seizures for quite a while (from what I could tell). One of the audience members told me afterwards that any one of the audience could have given the presentation he did since we all have our stories.

I've yet to talk to the people who run epilepsy foundation not only about how inappropriate it is but how inappropriate it appears. It just didn't seem like the right time.

 

[epileric]

Forgot to mention

Something the epilepsy foundation did do is at the end of the presentation (I don't know if it's at the end of all presentations) they asked that we fill out these review forms so that we could give our opinions. One of the questions was "what else would you like to see?" so of course I said I"d like a neurofeedback practitioner.

 

[Nakamova]

Good for you Eric. It sounds like the foundation would benefit from a push in the right direction.

 

[Bernard]

The person giving the presentation was quite nice. The drug company sent him as an "epilepsy advocate". I've never heard of that sort of thing before ...

Cyberonics was (still is?) using patient advocates at "seminars" in conjunction with people from local Epilepsy Foundation chapters to promote their VNS solution.

UCB is pretty active in supporting epilepsy causes like scholarship programs, seizure response dog programs, epilepsyadvocate.com (likely where Tim was recruited) and Epilepsy Foundation events.

 

[epileric]

He didn't talk too much about his VNS, mostly just how it works & why he might have a raspy voice every 10 (or was it 15) minutes.

He said that he was recruited when his neurologist asked if a couple of people could sit in. After the neurologists appointment they introduced themselves as UCB reps & recruited him.