Sunday, February 27, 2011

Open Letter to the Nova Scotia MS Clinic

Feb 27, 11

Dr. Verandar Bahn
Dept. Head NS MS Clinic


Dear Dr. Bahn,

I would like to bring to your attention that my life has been threatened by one of your clinic's doctors.

If at anytime you think the content of this letter is insulting or condescending, please rest assured that this is a pale comparison to how I was treated at your clinic on Thurs. Feb, 24 by neurologist Dr. Richard Leckey.

I never asked for this appointment, my requests for an appointment with you were ignored last fall when I was dieing. Therefore, the bill for my consulting services and travel expenses to attend this meeting will be sent by postal mail.

Dr. Leckey was insulting and condescending, but what concerns me more is his statement of not knowing what stenosis is. His credentials are now questionable as stenosis is covered extensively in your first years of medical school. Dr. Bahn, I learned stenosis in my military first aid training. Or possibly Dr. Leckey was acting that way he was to impress the uninvited guest to that meeting, that I can only assume to be a pharmaceutical representative. Regardless, it was unacceptable. If Dr. Leckey does in fact know what stenosis is, then he blatantly lied to me. This is also not the first time I have been lied to by a neurologist from your clinic.

I have also had the displeasure of meeting neurologist Dr. Alex MacDougall who told me that, “it would be impossible for me to have MS as the disease does not cause pain and only affects females”.

Your clinic doctors are obviously not qualified to be practising medicine in this country. And you Dr. Bahn, are guilty of misconduct yourself by purposely modifying medical documents on a patient that wanted to travel for the CCSVI procedure. You did a very good job of assessing her as being much healthier than she actually was. Unfortunately, those records do not coincide with your previous observations. So that patient and her husband are anxiously awaiting her next appointment with you.

It is all fine and good for you and your doctors to make your own rules, besides being treated the way I was, I have been denied aftercare by Dr. Richard Leckey because I left the country to save my life. This is a direct contradiction to what was said to us as patients by our Health Minister and is a direct threat against my life. As much as it pains you, you do not have all the facts and we know it as well as you. Your agenda now is to try to rake in as much money as you can off the backs of the sick and suffering people in this province while you still have time. Congratulations on being awarded two new clinical trials that should help with that.

Unfortunately, I am the person that exposed what the Novartis Gilyena sales reps were saying to and about MS patients. You can read it on my blog here http://savemarcelnow.blogspot.com/ as well as this letter and plenty of other tidbits proving that you do NOT have the MS patients' best interests at heart.

This new wonder drug that you are now going to push on the people of this province is responsible for the deaths of two people in their clinical trials. At a yearly cost of $50,000 per patient, and almost 3000 people suffering with MS in this province, you stand to lose a lot of money if the CCSVI treatment is allowed to be performed.

What this has boiled down to is a difference in Religious beliefs. You and your neurologist friends think you are God. Even other doctors bow down to your arrogance while secretly laughing behind your backs. Dr. Bahn, you are no god. You are nothing more than a man profiting off the sick and dieing while standing behind a glass wall.

As a person living with a fatal form of MS, I will not be treated the way I was treated by your doctor. I have bowed down, begged, and pleaded for help from the Health Minister and people like you Dr. Bahn. I have received nothing. That ends now.

Last November while at death's door, I, with the help of many friends, snuck out of this country to get a procedure that you condemn in an attempt to save my life. This was a calculated risk that paid off. I am still alive and getting stronger everyday. The Health Minister sent me a confirmation letter of her denying my compassionate request, with that, she gets the $12,000 bill for my procedure. Her refusal to even acknowledge my request will be her political suicide. You, on the other hand, may be facing criminal charges.

You and your doctors think the people in this province are uninformed. Rest assured you couldn't be more wrong. I would expect your doctors to start having more visits similar to what happened Thurs. The MS patients worldwide are banding together to teach others of the lies and destructive actions you and your colleagues are pulling.

Seventy years ago, the Neurological Societies convinced some obviously ill informed people that MS was an auto immune disease. You have had 70 years to prove that, and all you have proven is that you give us drugs that kill us and at best case are no more than 30% effective for less than 10% of the people using them for our progression. Even that is subjective. The poisons you were feeding us weren't killing us fast enough, so you moved patients that didn't know better into trying chemotherapy treatments. Everyone of those patients is doing worse and will die. Chemotherapy actually kills more people than cancer, but is a great source of revenue for you. The offer made to me was for “high” doses.

We as patients have tried the diplomatic approach with you and the Health Minister. We have asked for meetings, we have shown proof, yet you continue to ignore and insult us. As well as insult other doctors for having the decency to help us. We will not stand to have our lives threatened and jeopardized for your personal greed. You should consider the hundreds of patients that have left or are leaving for treatment as the rock that is going to break your glass wall.

If Dr. Gerald Mckean and the other vascular surgeons and interventional radiologists in this province that are qualified to perform the procedure continue their cowardly actions of not standing up for us as patients because of fearing a bunch of misleading neurologists, they will be dealt with accordingly. Thanks to the actions of you, your doctors and the Honorable Maureen MacDonald, the time of diplomacy has ended and if you won't help us, it is time for you to step down.

Dr. Bahn, all we as patients have ever asked is to be heard. The Hippocratic Oath states that a doctor is to do no harm. Dr. Bahn, ignoring us will kill us. Those of us that have had the treatment have for the most part, regained some quality of life and dignity. More and more are getting better everyday. Some of us like me, are now able to live a bit longer with our families. But we still have MS and we still need help.

We need proper follow up care such as venous ultrasounds to ensure proper blood flow is being maintained and monitoring for blood clots. This is already done in this country for patients that have had the same procedure for non-MS related issues. When we complain, we do not need a drug. We need you to listen to us as it is the drugs that we are complaining about. We know CCSVI is not the answer, but the benefits have more than proven it to the patients that you should be following and tracking those of us that have had it done. Above all, we need you to start treating us with at least the respect we deserve as humans trying to stay alive.

Marcel Gignac

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
 
Posts: n/a
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
 
Posts: n/a
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.