CCSVI RALLY- HALIFAX, NS - MAY 5, 2011

PRESS RELEASE

FOR IMMEDIATE RELEASE

MS PATIENTS TO RALLY NATIONWIDE ON MAY 5TH, 2011

HALIFAX, NS : MS patients Rally on Thursday, May 5th, 2011, at Province House in Halifax, at 1726 Hollis Street from 1:30 p.m. to 5:00 p.m. Patients who seek the right to have venoplasty to restore proper blood drainage from the brain will be rallying in cities across Canada to ask for the discrimination against MS patients to stop.

It is estimated that approximately 150-200 MS patients across Nova Scotia have undergone what has been coined as the “Liberation Treatment”. Many of these patients have experienced improved quality of life after undergoing treatment.

We are asking for:
1. The right to be tested and treated for CCSVI in Nova Scotia.
2. The right to have proper follow-up upon returning from foreign clinics which include:

• a. Doppler ultrasound imaging of the drainage veins from the brain;
• b. the right to be referred to appropriate vascular specialists;
• c. the right to have a non-biased registry for MS patients who have undergone treatment.

3. The right to chose quality of life over unproven or unavailable medical treatments.


Several MS patients who have undergone liberation therapy are being told by their physicians that they cannot be referred for proper follow-up as their doctor`s license to practice medicine could be revoked. These unfounded threats against our primary care physicians and this systematic discrimination against MS patients who have been treated for Chronic Cerebrospinal Venous Insufficiency (CCSVI) must stop.

On May 5 we will stand, “… UNITED IN SOLIDARITY, FROM COAST TO COAST, WITH OUR MS COMMUNITY! “

CONTACT INFORMATION : Crystal Bruce  CCSVI RALLY - Halifax

If I Wanted To Commit Suicide... I Would Go To My MS Clinic

Why would a noted professional such as Dr. Mark Freedman promote a drug that had a death rate of almost 2% in the initial trials? This doctor is supposedly an expert in Multiple Sclerosis, so I am sure he must have read the EMA Assessment Report on Gilenya. Being an expert, he must also be aware that this drug poses the risk to the patient of adding Herpes, Cancers, and organ failures to their suffering.

His only response seems to be, "But it is an oral drug".

That just means they have found a way to make you sicker with a pill instead of a needle.

Luckily for me, I am not eligible for this medication as it is designed for Relapsing Remitting forms of MS. Supposedly, it reduces the number of relapses. But, how would you know? Relapsing remitting means it comes and goes. People can literally go years without a relapse without medications. Gilenya does NOT stop relapses, it just supposedly slows them with no way of knowing.

The side effects for Gilenya are long and serious. All drugs have side effects, but most don't realize the risk they are taking. A good example of the risk is the instructions for your first dose of this medication. "Your first dose of Gilenya will be given in a doctor's office, hospital, or clinic. You will be observed for 6 hours following your first dose." Drugs.com/Gilenya

If you don't have a heart attack and die.. you get a prescription.

Seems safe enough to me. With the added price tag of approximately $48,000 per year, this is probably one of the most expensive forms of Russian Roulette you could play. And supposed experts such as Dr. Freedman, are pushing this poison on patients that don't know better.

I am not sure if this is much better than the risk of Tysabri and PML infections. But, since no one would answer my big Tysabri question on why so much phosphate is added to the infusion. I think I have my answer now. People that stop Tysabri, will forever be trying to increase their phosphate levels with supplements as it seems that Tysabri eats phosphates. Too bad you need phosphates to live.

Not surprisingly, the two most dangerous drug treatments, are also the most expensive, and have never been proven effective. They only way they could be proven effective is if they STOPPED the relapses. They don't.  Why would they push a drug like this? Simple economics. RRMS is the most common form of the disease with approximately 85% of all people with MS. Roughly, 1 million people easily world wide. If Novartis could get complete market share meaning that every person with RRMS was "forced" to use it's drug, they could look at revenues of almost $50 billion. PER YEAR!

They don't make drugs for my form of MS. People with RRMS should take particular note of that. If they can not make an effective drug for progressive forms of the disease, what are the chances they can make one for your form? The answer of course is slim to none but they do appreciate your money.

Welcome to reality. The CCSVI treatment has more than proven itself with evidence and is deemed unsafe. Unsafe compared to what? Our other choices?

Every month we have to pay a bill to the hydro companies for the power we use. We don't like it, but we really have no choice. This of course goes on for many years, and as long as we want to have power, then we have to pay. Then one day along comes a man that has designed a process that allows you to convert all the wasted power back into energy that you can use. Instead of having to pay for power every month, you can eliminate that bill altogether with one simple conversion. It may not be permanent, but at less than the cost of one month's power bill, having to redo it in a few years would still be livable. 

The hydro companies would go ballistic. They would say it is unsafe or illegal. They would call the people that promote this technology scammers and charlatans, and the people that use it would be treated as criminals. Important to note would be if you had any issues following the conversion, the hydro company would refuse to help you because you didn't want to pay a monthly bill.

Welcome to the world of Multiple Sclerosis and our neurologists.

How Many Have To Die Canada?

With the current rate at 400 per year in Canada, an average of just over 1 patient dies every day in this country as a result of Multiple Sclerosis. On a grand scale, that doesn't mean much, unless you look around the room right now as you read this and select one person you love. Now imagine that person dieing a horribly violent death after years of suffering needlessly. Death from Multiple Sclerosis is not like death from a heart attack. It is a slow, painful, debilitating disease with death usually resulting from organs being shut down by damage done to the nervous system.

Today was Bill's turn. Although we had never met, Bill is my brother. Not biologically or even by choice, but because we were forced to endure our pain and suffering. Bill's wife applied to the same heartless Health Minister to plead for a compassionate request to save Bill's life, like like my family and I did. And again she refused. Out of pure luck, I was able to be treated, proving in fact that this procedure will save your life, to now have to live with the death of Bill that could have been easily prevented.

For months, thousands of people with Multiple Sclerosis in this country have been screaming about the deplorable inactions of our elected officials with their "wait and see" approach to allowing venoplasty on MS patients. Nova Scotia Health Minister Maureen MacDonald (NDP), has taken inaction and turned it into murder. Twice now she has denied legitimate compassionate requests to save lives. Both times she denied them in hopes that they would die forever leaving the question unanswered of whether it would work or not.

William Peart's death this morning and my being able to write this now, prove that it could have worked. It has also proven to the people of Nova Scotia that this elected official that is supposed to have our best interests at heart, only cares for her own personal agenda. She made a choice and chose to let Bill and I die. I fought back, because we all have choices.

Bill's family now has the choice to pursue legal action against Maureen MacDonald for a wrongful death. I will gladly hand over the paperwork I have as I didn't like the thought of my family having to do it all. So I did it before I died.

The people of Nova Scotia have the choice of calling for an election, removal due to conflict of interest, or have the the Nova Scotia Attorney General do the right thing and file charges against Ms. MacDonald.

Sadly, Bill didn't get to have a choice. Maureen MacDonald took that away. So while Bill is watching over us that continue to suffer, we can only be comforted at the thought that he no longer has to. His family are now still forced to suffer knowing that the one person that could have saved his life, refused.

Of course Ms. MacDonald can also make another choice, but the intelligent one for her and her party now would be to allow the procedure once and for all in this province, quietly resign her position, and move very, very far away.

Our province's elected officials have been caught stealing from our public coffers and now our Health Minister commits murder. How many more have to die?

It's Time for Answers

Bill and Donna Peart live in Nova Scotia. Bill has has fought hard and suffered with Multiple Sclerosis for 16 years. Now the disease is winning. Bill even has an appointment outside the country to get the CCSVI treatment that will undoubtedly save his life. Sadly, this appointment is over a month away and Bill can no longer travel.

Appeals again sent to the Nova Scotia Minister of Health to save his life were like mine met with the same basic response. She would rather let him die a painful death. The part she doesn't realize is that some of the people getting this treatment are now again returning to the work force, paying the taxes that are keeping her employed.

Bill is now unable to eat and is looking at a feeding tube to pump food directly into his stomach. Because I have been there, I can tell you now as this disease progresses he will ask to be euthanized to end his torture. That also will be denied. Remember you are allowed to put down an animal to keep it from suffering but humans are forced to endure it because of stupidity. Donna and the rest of Bill's family will also be forced to endure this torture as well without ever knowing why.

I cannot comprehend how someone could display so much intelligence to be put into such a powerful position, yet is making such an asinine decision. There is no logical reason for her to do this unless she has a hidden agenda. So I have asked her boss, Nova Scotia Premier, Darrel Dexter.  I suggest everyone else do the same. Let's see if they have the balls to be honest or continue to be murderers hiding behind a thin veil of political bullshit.

Dear Mr. Premier,

By now I am sure that you as well as the rest of the people in this province realize that your Party made a grevious error with your selection for our Minister of Health.

Your selection for our Health Minister has just condemned another taxpayer in this province to death. The first person was me and that is yet to be dealt with. I have my death sentence in writing that states that her reply to me was only to appease you. Fortunately for me with the help of many friends and being forced to break a few laws, I was able to be successfully treated and am still alive. 

Last night CTV news reported that your Health Minister is going to force Bill Peart, another patient with MS, to die. This patient is no longer able to travel, meaning he can't even take the risk that I took. His only option will now be to suffer and die to only add another nail to your political coffin.

There is no logical reason to deny this treament in Nova Scotia other than to further a corporate agenda. The NDP is all about taxes in this province, so let me enlighten you to what the 3000 people with MS and their friends and family know and are teaching your voters.

People in this province on fixed incomes can not afford to live here because our taxes are higher than anywhere else and we are provided less services. The amount of taxes that are collected and handed over to the Department of Health is exorbatently deplorable. The current average cost that MS patients in this province face is upwards to $50,000 per year in medications. The average lifespan of someone using these drugs might be at best 20 years. This is paid for by you from us and we have 3000 patients.

The cost to do one angioplasty treatment on one MS patients would be less than $5000. Even if this treatment needed to be performed every 6 months, it would still be a considerable savings while offering an improved quality of life for the patient and their family. This alone would be a major win for the rest of the province as taxes could be lowered and I could stop doing all of my shopping in NB. We save approximately $150.00 per shopping trip by driving 10 minutes out of the province.

There are very little risks to this treatment and it is proving to be more and more effective every day. The only risk has been political inaction and the refusal by Canadian doctors, including to myself, to have proper aftercare. Simply put, you could actually save lives and a lot of money by just doing the "right" thing for the people of this province. We aren't asking for this to be etched in stone that every MS patient will get this treatment. All we want is to be able to make our own informed choices. We can't do that if your Health Minister is mis-informed by the very people that stand to lose the most.

You can fix this and possibly save your Party in the process. The Health Minister is refusing to take a risk in fear that something bad might happen. This is recified by having Mr. Peart and his family sign a waiver assuming all risk in the unlikely event that something should happen. If there is a cost associated that the Province does not want to cover, I am more than sure that Mr. Peart and his family with the help of friends could cover that. The procedure could be done in Halifax by a vascular surgeon such as Dr. Patrick Casey who has staff trained in the procedure. If Dr. Casey had any misgivings about performing the procedure, I am more than sure we could get an expert such as Dr. Sandy MacDonald to be on site with a simple invitation.

The pay off for this is that Bill's wife and family will get to enjoy his new found quality of life along with him and not have to watch him suffer to his enevitable end, while you and the Nova Scotia NDP party become the country's hero instead of the disgrace it has become. Or your could ignore us as we have become accustomed to and be willing to commit murder along with your Health Minister.

For months I have been racking my brain to figure out why our Health Minister would take such an inane stance that would cause people to suffer and die. I can only come to one conclusion and I will ask it right out, because you know we will find out regardless.

Mr. Premier, is your Health Minister Maureen MacDonald or any other party member receiving incentives to keep this procedure from happening in Nova Scotia? I can see no other logical reasoning for this treatment to be denied just in the impact to quality of life and savings in taxpayers monies. The people suffering in this province deserve to know the truth.


http://premier.gov.ns.ca/contact/

http://www.maureenmacdonald.ca/


Maureen MacDonald has solely removed the title of Honorable from the position of Minister of Health by committing the most dishonorable acts imaginable to the people of Nova Scotia.

Things You Probably Don't Know About Multiple Sclerosis (and maybe shouldn't)

People die every day from MS. It's true. The reason you don't hear much about these deaths is because of semantics. When you are diagnosed with Multiple Sclerosis it is considered an incurable disease. When you die, an autopsy may or may not be preformed. Regardless, the outcome is the same, once you are labeled with MS, it doesn't matter if the neurological damage stops your heart from beating or your intestines close up not allowing food in, death will always be listed as "Died of Natural Causes." Therefore the claim that MS rarely kills is a blatant lie, everyone with MS will die, the aggressiveness disease just dictates how fast it will kill you.

No one know what causes MS, or how it actually functions. Over the last 150 years, there have been two theories that are completely unrelated from two different branches of medicine. The original theory is that MS is a disease caused by vascular malformations blocking or disrupting blood flow from the brain allowing the blood to oxidize leaving trace elements of iron in the brain causing neurological damage. The second theory to emerge is that MS is an auto-immune disease. Meaning for some unknown reason the body's immune system starts to attack the insulation called myelin that covers the nerves. Neither are correct nor are they wrong, although this last year has proven some remarkable headway into the vascular side with the use of venous angioplasty by clearing obstructions and relieving some symptoms and possibly slowing or stopping progression.

Multiple Sclerosis is one of the hardest known diseases to accurately diagnose. The disease can have over 50 different symptoms associated that can come and go at anytime. Symptoms can be as minor as a small patch of itching skin to a suicidal level of pain. Symptoms may persist for weeks or months, then suddenly stop for years. Also making diagnosis difficult are the number of other disorders that mimic many of the MS symptoms. These include Lyme Disease, ALS, stroke, as well as many others. Therefore the diagnosis criteria is a nightmare as you first need to rule out all the other disorders it could be.

It is said that women are more than double than that of men in having MS. This I also don't think is entirely accurate. This is more likely due to mindset. Males of our species grow up with a slightly different doctrine than our female counterparts. "Suck it up and be a man." As children we are taught not to whine about minor aches, pains, or discomforts as it may show a sign of weakness. I myself went for years with my hands falling asleep every time I tried to hold on to a vibrating steering wheel. I ignored it. It got worse.

For the most part, MS patients are the biggest liars in the world. They will try to walk, talk, and act normal just like everyone else. At least in the beginning. This is not a bad thing. It is only bad that they try to hide what is happening to them in an effort to appear normal to others. The good thing is that they also hide it from their loved ones. MS patients also have very evil thoughts when they hear the words, "Well you look so good", or "Maybe you just need some rest." Another lie that is hard to get them to admit to is wishing their disease on anyone else. It happens. It really is okay to be yourself now. They no longer lock us up in insane asylums for having this disease like they used to.

MS patients get called names. Unfortunately, most of the name calling comes from friends and family members and starts even before you are diagnosed. I hear that in some instances, the name calling stops after the diagnosis, but not in my case, so I just take that as a rumor. Some of these names will be "lazy", "useless", "hypochondriac" and many more.


Every person with MS has an "expert" that knows exactly what they need. Again this is usually friends and family and sometimes it can be very contradictive. You should eat this or not eat this. You need to exercise, you need to rest more. The best thing to do is tell these experts to "shut up and leave you alone". The information they provide is useless to you and you won't get in trouble for being mean to them. (This is covered below with "mood swings.")

The scariest aspect of MS is that any part of the body that is controlled by nerves (try to find one that isn't) can be affected. Imagine if you will that the meylin sheath covering the inferior anal nerves and or the inferior hemorrhoidal nerve becomes damaged.  It can happen. These nerves are extremely important in the human body as they are the nerves that distinguish the difference between a fart and a poop. Nothing more needs to be said. 


The medications they give us are actually doing more harm than good in most cases. A lot of the chemicals used in our medications are classified as carcinogens. The side effects of these medications can actually be worse than the disease and yet have never been proven to be effective. In some cases, these drugs actually caused the deaths of patients during clinical trials, yet are still approved. For example, one well known MS drug therapy for some reason also contains very high concentrates of phosphorous which actually causes neurological damage on top of liver and kidney damage.   


The number one drug that has proven time and time again to be most effective is illegal for MS patients everywhere in the world, except Canada. Since Canada has the highest incidents of MS in the world, this is good for Canadians, but sucks for everyone else. Health Canada has approved cannabis for MS patients. Of the 60 known medicinal compounds in cannabis, over half can be directly beneficial for symptom relief and disease management. Some of these benefits are from the CBD's in the plant that act as vasorelaxants, antispasmodics, neuroprotectives, and analgesics. It works and there is no chance of overdose.


 As a patient you will also be called and treated with two new nanes. Guinea pig and cash cow. Doctors will provide you with experimental medications in an effort to make you feel better while making them more money. The drug therapies that are approved for MS have a very high price tag. The newer therapies are costing $50,000 per year. This make an MS patient a very lucrative commodity. Because of the competition of other drug manufacturers, sales representatives resort to incentive programs for doctors and clinics that prescribe their medications. When your MS doctor suggests a medication that you refuse, he isn't getting mad because you don't believe it will work, he is mad because he is making nothing off you. 


 You would also think that a person with MS would have a place to turn for help. Sadly, this is also not true. Each country has a Multiple Sclerosis Society in one form or another. These organizations collect donations and do fund raising in the hopes of one day finding a cure. Their executive positions are very well paid careers. The majority of the money they collect goes to administration costs. The majority of the rest is used for advertising, and donations to pharmaceutical research in the form of grants. The last thing they would ever want is a cure for MS. For them to say otherwise is a lie as a cure means they will be unemployed. With the remarkable results by using angioplasty on MS patient's veins, you would think the MS Societies of the world would be embracing this as the most remarkable advancement in 70 years for MS patients. Sadly, evidence is showing that the societies sat on and deliberately hid a neurologists paper written in the 1970's that stated MS is vascular in nature and could be corrected. The societies' new tactic if you question this on their online forums, you will be banned and the question deleted. Ignoring the truth does not make it go away.


Having MS is not the end of the world. You may wish for it at times, but it really isn't. You can also have a lot of fun with your MS. My favorite saying when someone wants me to do something that I don't particularly care to do has become, "I'm sorry, I'll be sick that day." MS can get you out of anything including jury duty. Doing this is actually more beneficial for your health than you may think. The most common trigger for MS relapses and  flairs is stress. If you have to go to some function that you don't want to be at, you will become stressed. Stay home and your body will thank you for it. 

Although the cognitive impairments may prove to be disheartening and disturbing at times, you can still have fun with it. Especially if you have kids around. I myself successfully convinced a 10 year old that it is only logical to keep your liquid dish washing soap in the refrigerator. I still have no idea why I kept putting it in there. But I have a friend that keeps putting her laundry into the dishwasher. It happens, have fun with it.


You can also have a lot of fun with "mood swings" It is no wonder we get them. Our bodies and brains are wreaked with neurological damage. We are treated as outcasts and malingerers. With MS you can actually say all the things that you would never have said before because someone might think badly of you. So when you are standing in front of your doctor and he says something stupid, make sure you tell him so. Say what you want, when you want, and to who you want. If they don't like it and you feel bad, blame it on the mood swings, you can't help it as they are actually brought on by other people's stupidity. Plus keeping it bottled up in you just adds to the stress that is killing you. 


With an MS diagnosis you are given two choices. You have to decide which path to take. You can take the "curl up and die" attitude which would be just accepting that you are going to suffer and die, or you cling to that last hope that that pharmaceutical which is actually killing you faster, will eventually work. Or you can take the "fight back" attitude. This one may take a bit more effort but will be well worth it in the long run. This includes not listening to someone with a hidden agenda, researching information and double checking all that you find, and understanding your own disease. Then and only then, you will be able to make an informed decision on what form of treatment you want to attempt.


Guess which choice I took? 

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

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.