They are most diffinately in bed with Cyberionic$ Check out that purple box.
Click me

Isn't Avenues thru CYBX?

Dispatch B)

That ad is on the Cyberonic$ website.

Do they do that for brain surgery?
Neurofeedback?
Any other form of treatment?

They would be considered equal and unbiased if and ONLY they embrace ALL forms of treatments with equal assistance. If not, then the Epilepsy Foundation has been bought and paid for by Cyberonic$

Surprise surprise surprise! : nono :

Go to Epilepsy Foundation and put "travel assistance fund" in search. The first link you will get will be "Eligibility" then click to open the document and you will see where Cyberonics is sponsoring this funding.

BLAAAAAAAAAAAAAAH..........that's not right. They will help you have an invasive surgery, but there is no assistance for Neurofeedback, etc........

Dispatch B)

Geez, it would be nice if they helped some of the people whom have been left in the dust by Cyberonics. Its looking like my VNS won't be covered even though it was paid for for by Medicaid, and the new CMS decision didn't come out until a year after I was implanted. The docs office is doing what it can, but it doesn't seem likely they will pay since its for depression. So as of right now I owe for 3 adjustments ($ 360.00 per adjustment). Not to mention I'll never be able to afford the battery replacement, or to have it removed (yes they said they don't pay for removal either). So it would be nice if Cyberonics or one of their partners stood up to the plate and at least helped existing patients. Especially since I had no idea I would be in this predicament a year ago, otherwise I would not of had it done. And the tone with Cyberonics totally changed, from being overly helpful in the beginning, to now not offering any help or advice. Maybe I should of smeeled the skunk. I guess whats done is done now anyway.

Mary

Hi Mary,

One thing you can do is to contact the woman who has been helping you at the doctor's office and asking...under the circumstances that Medicaid has left you...would they accept the same payment from you for each VNS related service that they would have received from Medicaid.

I don't know the exact amount...but I'm guessing Medicaid pays between $50-$100 for the $360 adjustment.

Why should your doctor make more from you than he would have from Medicaid?

Good luck!

That is an excellent idea, Oreo! You have made a very good point and if Mary's doctor is truly concerned about her since the VNS is working for her, the doctor's office should be willing to accept the same payment they would have received from the vendor.

That is using your brain!!! :Great!:

Hugs,
Cindy

Cyberonics has been a contributor to the EFA since 1993.

Check out page 21 of this 1997 CDRH Neurological Devices Panel transcript.


http://www.fda.gov/ohrms/dockets/ac/97/transcpt/3299t1.pdf

I hadn't heard of Medicaid not paying for explantation, but it wouldn't surprise me. I'm currently waiting for approval for my surgery now. But the neuro says, given my current range of problems, he thinks Medicaid will pay for this. I don't know the circumstances involved with adventurer06's situation, but it's definitely worth talking with the doctor's office. And you can bet I'm going to raise the roof if Medicaid tries to come at me now and refuse to pay for this one.

Is the EFA in bed with Cyberonics ? We already know that Cyberonics has been a donor to the EFA since 1993. The excerpt below was taken from the same transcript (pg 101). The last paragraph proves they are in bed together.

Has there been any thought, particularly from
members of your study groups, into how this device should be
handed out, literally? I worry about a neurologist
someplace saying he's got a tough case to manage; he's sent
to a neurosurgeon, and they slip in one of these devices
outside the auspices of an epilepsy center and particularly
neurologists and neurosurgeons dedicated to epileptology.
Maybe Dr. Hauser or Dr. Salinsky or others in the room might
want to comment on that.
DR. DUFFELL: I mean, I can comment briefly before
Marty makes his statement that, I mean, certainly the intent
of the company to make sure that the individuals who implant
and treat with the device are adequately trained, and one of
the things that we are striving and working with the agency
over the labelling is to make sure that the labelling, of
course, very appropriately says what the device is and is
not capable of doing so that the expectations will be right.
We're not interested in seeing this thing
prescribed like aspirin for the treatment of epilepsy. It
would be counterproductive to our commercial success years
from now to have that happen. So, with that, I will let Dr.
Salinsky maybe additionally answer that.
DR. SALINSKY: I will just comment as a clinician,
and I share your concerns. I don't think this situation is
terribly different than the situation with the use of
several potentially toxic antiepileptic drugs and, frankly,
even with the situation involving epilepsy surgery, where
one might be concerned that not every patient undergoing
surgery is evaluated at one of the best centers prepared to
do that surgery.
I think it will basically boil down to an
educational effort through the company, through physicians
who have worked with the device, through the Epilepsy
Foundation of America, to educate neurologists around the
country as to the appropriate indication and to make sure
that surgeons who are implanting the device are well-trained
with the implantation.

http://www.fda.gov/ohrms/dockets/ac/97/transcpt/3299t1.pdf

In the above excerpt Dr. Duffell speaking on behalf of Cyberonics states "We're not interested in seeing this thing prescribed like aspirin for the treatment of epilepsy."

The MAUDE reports that i have posted show that the VNS is being implanted in patients with one or two seizures a year. I believe that Cyberonics is VERY interested in having their little device prescribed like aspirin for the treatment of epilepsy.

The CEO of the EFA Paulette Machara told the Neurological Device Panel " The Epilepsy Foundation of America does not endorse this product or any other treatment option for epilepsy." Yet the EFA played a big role in getting the FDA to approve the device by having their CEO tell this panel about all of the wonderful benefits that the VNS could provide. The EFA also paid for the transportation of three sucess stories so they could also tell this panel how great the VNS is.

The testamony of Tim Fabian sounds just a little suspect to me. Here is a guy having up to 15 seizures a day and his seizure activity comes to a halt just as soon as the VNS is activated. They just turned it on and his problems were solved, no adjustments or anything. Below is a quote.

" I had surgery to implant this device in December. The NCP system was activated in January of 1996. Since then, I have had no seizures. Prior to this device being put in, I had 10 to 15 seizures a day."

In my opinion the only reason that Cyberonics has been a regular donor to the EFA since 1993 is because they had to have the EFA on their side in order to get FDA approval.

http://www.fda.gov/ohrms/dockets/ac/97/transcpt/3299t1.pdf

:D

Worked immediately with no adjustments? WOW...I'm amazed :rolleyes: . Wonder why CYBX still has to do studies on what miliamp is most effective. I know everyone responds differently to VNS but geesh...I don't buy this one even if it was on sale. This guy is more or less saying VNS is a cure but CYBX manuals say VNS is not a cure but adjunctive therapy.

AND...we've got a member here on the board who was told by a doctor his daughter's VNS would not be effective with it being set at the lowest setting.

B)

Mr Fabian seemed a little startled when asked who paid his way to this hearing.

MR. KEELY: One more question: could you disclose any financial involvement you have with the firm or any other firms?

MR. FABIAN: None.

MR. KEELY: Have they paid your way here?

MR. FABIAN: Have I?

MR. KEELY: Has the firm paid your way?

MR. FABIAN: Yes--no, I mean, the Epilepsy Foundation paid for me to come here today.

DR. WILKINSON: Not the company.

MR. FABIAN: No.

DR. WILKINSON: Okay.



page 15

http://www.fda.gov/ohrms/dockets/ac/97/transcpt/3299t1.pdf

Sounds like a kickback?

Shoot! EFA and CYBX are all over each other, just check back on their history with former CEO Skip Cunnings. The dinners, awards etc.

In fact CYBX and EFA made a visit to my site early on, from that moment on my screen name "Birdbomb" was BANNED from the EFA boards.

:D

Get out BB really? Now that is so totally biased on EFA'a part.

I was told by Cyberonics (when they used to like me) they wanted me to go speak for them at conferences, etc., and they would pay my expenses. Betcha they don't want me to speak at their conferences anymore....

B)

Hey Dispatch, I can understand that one. Some time back, my psychiatrist received some info from Cyberonics about some kind of patient advocate program. Where these advocates could speak on behalf of Cyberonics to help answer questions from prospective patients and their families. My psych passed this info along to me since I was doing so well at that time, and because I tend to be wordy and articulate when the mood strikes me. :wub:

But I always had a problem with the idea of working on behalf of the company to help sell their products. It's one thing to spread the word because you believe in a product. But who would you be more likely to believe? Someone speaking on behalf of the company, or someone speaking on their own behalf with no ties to the company? : g :

Guess who never signed up for the program?

: cat :

:D HI cash!

HAHA you never signed up...too funny!

Your scenario is about the same as mine. They sent stuff to my doc for their patient advocate program.

On their website where they have some patients profiled for testimonials, the dates correspond with the earlier studies prior to FDA approval. There are just a few since then.

Take care!
B)

The good people of New Zealand got a little angry with the EFA.

News
EPILEPSY FOUNDATION RELATIONSHIP CEASES
18 Mar 2009


After many years of co-operation, the Epilepsy Association of New Zealand Inc (Epilepsy New Zealand) has severed it’s ties with the Epilepsy Foundation.

Epilepsy New Zealand’s Board met in December 2008 and passed a resolution to disestablish the relationship.

The Board’s concern was that donors were given the impression by the Epilepsy Foundation that donations were being retained in the donor’s local area and supporting the Association. Donors believed they were helping local Epilepsy New Zealand Branches and the local community, which was not the case.

In fact over the last three years the Epilepsy Foundation has received donations of $2.82 million, and was paying approximately 75% of donations to the telemarketer, whilst approximately 22.5% went to the Foundation for managing its office in Hamilton, and only approximately 2.5% (i.e. two and a half cents in every dollar) was going to the local Epilepsy New Zealand Branch to enable it to assist people with epilepsy.


http://www.epilepsy.org.nz/main.cfm?id=71&nid=33

OMG! A little dissention among the ranks, I would say. However after reading why, I totally see the reason and could not agree more.

From the earlier days, I've been in two "Portraits of Hope" books. Funny, they haven't contacted me lately. All my contacts are gone!

:D

HI Ya Labrat...do you have any copies of those Portraits of Hope you've been in? I would sure love to see them!

HI Ya Gel and Dennis...OMG...talk about the EFA helping fellow mankind. Geesh...

B)

I'll see how many I have. I am saving three for my children.

:D

Ok great!

B)