Wednesday, February 16, 2011

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
 
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Default 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
Default 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
 
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Default 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
Lol Re: Gilenya in trouble already?

Quote:
Originally Posted by Anonymous View Post
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
Default Re: Gilenya in trouble already?

Quote:
Originally Posted by Anonymous View Post
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
Default Re: Gilenya in trouble already?

Quote:
Originally Posted by Anonymous View Post
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.


13 comments:

  1. You make some good pointd about big pharma, but I'm afraid your polemic about the old DMD's that do work is ill-informed. I'm not impressed by people who wear their biases on their sleeve.

    ReplyDelete
  2. Rx: A medical prescription. The symbol "Rx" is usually said to stand for the Latin word "recipe" meaning "to take." It is customarily part of the superscription (heading) of a prescription.

    Another explanation for the origin of Rx is that it was derived from the astrological sign for Jupiter which was once placed on prescriptions to invoke that god's blessing on the drug to help the patient recover.

    ReplyDelete
  3. I thought that explanation would help folks unfamiliar with maybe stateside lingo ?

    Thanks Marcel.

    ReplyDelete
  4. @Helen, I am sorry you feel that way but I have no bias towards any pharmaceutical product. The old drugs according to the manufacturers showed up to 30% effective, but a closer look shows it is actually about 8%.

    I will not take any MS drug because of what is put into them. More so for what they don't tell you what is in them. Conspiracy theory or not... there is no drug researcher that would ever take one of these drugs if they suddenly got MS.

    It's for the same reason that MS Society executives denounce CCSVI yet secretly run off and have it done on themselves or family.

    $$$$$$$$$$$$$$$$$$$$

    ReplyDelete
  5. Thanks for writing this, Marcel. I was pretty shocked and disgusted when viewing this industry board and I am sure others are too. You speak the truth and we ALL know it! The truth is written in black and white by those who make money off of us - the cash cows of big pharma!!!

    ReplyDelete
  6. For goodness sake people wake up. Pharmaceutical companies are in it for the money. They are businesses and are not in it for the well being of anyone. Just like big corporations fire thousands when their profit margins are cut into, pharma must and will do what it takes to make their profits. I have a friend who works for Lily and she even tells me that their price lists are guarded like Fort Knox.
    Be informed. We can continue to take the drugs if we are willing to make really huge sacrifices in the face of worsening deficits. And pharma knows that desperate people will do anything and take just about anything.
    Informed decisions people. And accept the reality and consequences.

    ReplyDelete
  7. Thanks Marcel, This would have been so easy for everyone if they would have just acknowledged that angioplasty does work for MS but they didn't and now we MS patients are digging up the dirt. I hate the position they (pharma, neuros, etc) have put us in but all we want is to feel better. Pharma has not helped us with this for MS, but, it has helped for some other diseases but patients must read and research their drugs always!!!

    ReplyDelete
  8. PIG PHARMA RULES ALL. They rule your doctors, your health care system, your media, your government and are all over the world. PIG PHARMA RULES ALL.

    Yes we need PIG PHARMA but not to put us on food stamps and welfare. They are greedy and truly do not care. IMHO.

    ReplyDelete
  9. Another "interesting" comment that was on the same thread: ‎"The quicker they come on the quicker they will come off...sell away my friends, can't wait to see the nasty, filthy, awful things that will soon happen to these poor people. All they want is hope, not more health problems. Only time shall... tell

    Tic toc, tic toc"

    ReplyDelete
  10. Incredible! Yet another drug whose side effects lead to death. A drug company can get this kind of drug approved, yet CCSVI must have clinical trials done.

    ReplyDelete
  11. Great to see Big Pharma being Big Brother, amazing what several billion dollars can do to their ailing conscience causing their sleepless nights.

    They have all the compassion of a corner thug DRUG DEALER because that is what they are. Do not get me wrong I am all for capitalism, but when it comes at the expense of the suffering, THAT is where any one with a heart draws the line.

    ReplyDelete
  12. Hello, Marcel! What a refreshing way to begin my day! It's great to find someone else writing my own thoughts. The posts from the pharm reps is disgusting, though predictable.

    It's sad to me to see how many people with MS are convinced the DMD drugs have worked for them. HOW CAN YOU POSSIBLY KNOW THAT? No one knows what would have happened with their MS if they hadn't taken the deadly drugs. So, how to say your lack of progression is due to the drugs or just the way MS is for you? Right, NO ONE KNOWS!!

    Thanks for all you said. You have made my day. I will be a continuing reader.

    ReplyDelete
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