Gilenya (Fingolimod), A letter from NORVARTIS & the rats of CaféPharma.com
From: multiple.sclerosis@novartis.com
To: klynch56@earthlink.net
Subject: Follow up from Novartis Pharmaceuticals Corporation
Date: Feb 23, 2011 1:24 PM
Dear Ms. Lynch,
I wanted to personally thank you for reaching out to our team at Novartis Pharmaceuticals Corporation with your concerns about comments posted on the website CaféPharma.com. As my colleague Ian discussed with you yesterday, we take patient feedback very seriously, and we are very displeased that such a dialogue would ever take place. We do not endorse this type of conversation.
CaféPharma.com is an independently owned website in which the overwhelming majority of comments are posted by anonymous users. Novartis has no association with or control over the site or its content. And unfortunately, because comments are posted anonymously, we are unable to ascertain the identity of the person(s) responsible for the posts on CaféPharma.com.
Again, we appreciate the feedback and share your concerns. Novartis is fully committed to supporting people with MS through innovative treatments and a range of resources to help manage their disease, and the well-being of people with MS is always central to our efforts.
Sincerely,
Dagmar Rosa-Bjorkeson
VP, Head of MS Business Unit
Novartis Pharmaceuticals Corporation
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Dear Ms. Rosa-Bjorkson,
Thank you for taking the time to respond to my concerns. You say you take patient feedback seriously, so I am stunned by your response. Did you even read the messages the Gilenya sales reps posted? The thousands of patients who read the posts connect Novartis to the comments, and are deeply offended. Even though you do not "endorse" the comments, you are savvy enough to know that consumer perception is a powerful driving force, and I would have expected that your response would have been stronger and much more conciliatory. Your response was a brush-off. I am hoping you take me and my concern seriously. I do need to hear back from you. I would appreciate a phone call.
Kathleen Lynch
Professor Emeritus
206.393.8707 Pacific Standard Time
SERIOUSLY? SERIOUSLY? THIS IS THE RESPONSE WE GET? Could you please email Ms. Rosa-Bjorkson so that she knows we are a force to contend with.
Source: http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/paper-on-ccsvi-and-medical-paradigms/10150104657632211#!/note.php?note_id=10150114980833857&id=578879694
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Gilenya (Fingolimod) - New Oral MS Drug... "Warning"
For the last few weeks, I have been working hard at avoiding stress in an effort to get better. I literally have tons of snow to move and it just keeps coming. So I am forced into exercising my body while giving my brain a much needed rest. Well the stress came back yesterday.
As most people with MS know, before Dr. Zamboni came along, the biggest news to hit for MS is the development of new oral drugs to "help" control the progression of MS. This is important as up to this point the Disease Modifying Drugs (DMD's) have been either self injections or intravenous drips monthly in a hospital or clinic. These drugs actually do more damage than good in the long run due to their toxic nature. The side effects for most would be comparable to getting the flu. Not very fun when you get to feel like that 3 times a week.
After years of using these drugs, most have found little benefit. At most, 30%. They claim this as a good thing while ignoring that 70% actually got worse or died. Tysabri, the newest of the DMD's has been pulled for being linked to causing PLM, (progressive multifocal leukoencephalopathy) a potentially deadly brain infection. Then obviously with enough money passing hands, it is again allowed to be risking peoples lives.
So the pharmaceutical geniuses decided to come out with a pill that could do the same thing as the rest of the poisons. Well, with 2 deaths during their clinical trials, they succeeded with their goal. At least the PLM wasn't identified until after trials, this new one we already knew would kill you before it went to market. Luckily for some of us that have been able to get the CCSVI treatment we won't have to worry about being poisoned to death.
For the last few years, I have been stressing that we as patients are nothing but "cash cows" for doctors and pharmaceutical companies. A lot of people have a hard time believing this. I have even been openly attacked for saying such things by people that trust their doctors and they poisons they are fed. Of course these people have never bothered to verify or even ask if a drug is safe. They just take it and when they die they blame it on God. Probably why so many doctors think they are God, they are doing His work... prematurely of course. So for the people that believe the crap they are fed I am more than happy to share the following.
Yesterday I was sent a link to a message board thread on the pharmacafe.com website. This website is set up for pharmaceutical reps to.... well... basically discuss how to screw over other reps and patients. An MS patient looking for information on the new drug, Gilenya, and found something much more disturbing than just an unsecure message board. So in an effort to promote honesty, I will share some of the gems posted by the reps that visit your doctors. Also important to note is these cowards post as anonymous for their own safety.
The conversation is in regards to a story here http://www.bloomberg.com/news/2010-10-19/doctors-prescribed-novartis-gilenya-ms-pill-13-times-citi-says.html?cmpid=yhoo, that showed the dismal failure out the gate of the launch of Novartis' new "Wonder Drug".
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
“Don't forget, 13 Rx = $650,000 a year. First week is meaningless. Know how long it takes to get an appointment to see your neuro? Think general neuros want the waiting rooms filled with patients before they even get a grasp of monitoring and how to do it? We'll find some way to screw it up (like every launch), but this drug will make $$, and any rep who can't make a great bonus on this initial incentive plan is an idiot and should be made to trade places with any CV or neuro or Fanapt rep waiting for the ax to fall....”
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
“I along with many collegues are not seeing the Rx's come in. These doctors are as frightened as they comen many more are not writing than are. And the folks that are writing a lot are very few and far between. Not hitting the panic button yet, but for a drug so anticipated no one is using it. MC tiers is not helping the situation either, but that's no excuse at the end of the day.
And here come all the barrage of your a loser comments. I know, I know. But that doesn't change the fact nationwide this med is currently sluggish at best.”
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
“This is what you get, when you hire a bunch of idiots who know nothing about the MS market, reimbursement nor biologic therapy. I bet you, all 13 pts were from clinical study centers. Gilenya is priced 10% to 15% higher than Tysabri, and Neuros make money off its infusions. Next, over half the sales force has never sold MS products, let alone Biologics. But that's Novartis for ya, greed always rules the day.”
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
Quote: Originally Posted by Anonymous
“This is why this industry sucks. Here we have a guy who is happy to see a good drug fail because he wants to make money. I hope you get cancer and the drug that is saving your life get pulled because of bradicardia.
I know! Come on every patient is different and there is a therapy for each patient. Maybe it's a weekly IM, or an every day or every other day injection. Maybe it's an oral. This launch means there is one more option for patients. Would I make the oral my first choice if I was an MS patient. Probably not unless the existing therapies with a safe track record did not work then I would take the risk.........my point is there are patients for this drug.”
Just some of the interesting things they say when they don't think anyone is watching. But of course, MS patients will always speak up.
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
Quote:Originally Posted by Anonymous
“Real MS patient. Found this board when researching the cost of Gilenya. I was rx'd this drug by my neuro. I've gone through all the tests and qualified. Just got a call from a Gilenya rep about my insurance coverage. I have excellent insurance but this drug is still classified as a "non-formulary" drug. As such, my co-pay would be 60% making my out of pocket cost $2351.53 per MONTH. I qualify for the Novartis assistance of $800 per month or $10,000 per year. This still does NOT in any way make this drug affordable. So, this will be a script that will NOT be filled. I know many other MS patients in the same boat. If this is any indication, this drug is in trouble until the insurance companies add it to their formularies.
Other MS patient. Your out of pocket balance after $800.00 reimbursemet is my mortgage, property taxes, car payment, car and homeowners insurance rolled into one monthly payment.
No wonder the drug isn't selling.
What gives anyone the right to charge nearly $50,000/year for a drug regardless of its cost, to develop, orphan status, marketing expenses, doctor payoffs, etc. And you wonder why the medical care, insurance, pharma, biotech are so screwed up. Something is terribly wrong.”
The drug costs more than any of the other drugs. It is not covered by insurance. And it CAN kill as proven in their own trials. And they will keep pushing it with lies just like every other drug they sell.
So for the ones that still believe that the pharmaceutical companies are in it for you and not the money, you should seriously rethink the rest of your life. You can die a slow suffering death brought on by poisons and toxins. Remember, Ibuprofen is made of known carcinogens. Do you think they care what you take as long as they make money? The next option of course could be suicide as this would prevent some long term suffering as well as free up valuable breathing space. Or, you could grow a brain and see what these people are doing to you. Get off your anti-depressants. The reason they push the pills on you is to shut you up.
The entire thread can be found here http://www.cafepharma.com/boards/showthread.php?t=441892&page=2, and I will forewarn you that the MS patients have taken it over. But you can find gems like....
Anonymous
Posts: n/a
Re: Gilenya in trouble already?
Quote: Originally Posted by Anonymous
“I do not care about the MS patient or any type of patient. My job is to make money to put food on the table for my family. I will do anything to make as much money as I can make. I could care less about MS, patients, future therapies. I need to make money today and the MS patient allows this to happen.
You're disgusting!”
--------------------------We are all Cash Cows.------------------------------
Source: http://savemarcelnow.blogspot.com/2011/02/gilenya-fingolimod-new-oral-ms-drug.html?spref=fb