Dear Ms. MacDonald,
This is in response to your email included below received on Nov. 18, 2010. Because of the timing of this letter and my worsening condition, I took this letter as it was intended, as a further attempt to shorten my life by adding more stress to my already compromised system. You have never hidden the fact that you are willing to let patients die in this province. You just conveniently skirt the issue so as to not look like the murderer.
It is no wonder why you are probably the most hated person in the province of Nova Scotia right now. MS patients do not take this disease lightly. Until you decided to take a stance that would kill patients, MS patients would never have wished their illness on anyone. From the comments that are being made, I do hope wishes do not come true for you and your family.
Because you have taken the liberty of condemning me to death by refusing treatment for a known fatal form of Multiple Sclerosis. I will also take the liberty to reply to your letter publicly to point out your errors and the importance of having you removed from your position as Minister of Health.
For simplicity sake, I have colored your email in red.
Dear Mr. Gignac:
Thank you for your e-mails dated September 13, and October 10, 2010, to
the Honourable Darrell Dexter and me, regarding the experimental
treatment for Multiple Sclerosis (MS). The Premier requested that I
respond on his behalf.
First and foremost, the letters sent were directed to you and copied to the Premier. They were an official request for a compassionate intervention to possibly save my life. Your comment of responding for the Premier would infer you have no intentions on doing your job as mandated. This of course is only one of the reasons there is now a petition at http://www.ipetitions.com/petition/nsccsvi/ requesting you be removed as Minister of Health.
I mention the petition as it may look similar to a letter that was hand delivered to you by Mr. Alfie MacLeod (PC) that I wrote. The petition itself is not mine, it is based off that letter. The letter was shared and the petition was born. So a fair warning would be, that you are no longer dealing with me and a few of my friends, but more like 75,000 patients and their families and supporters.
I understand that you have spoken with Ms. Kathryn Morse, my Executive
Assistant regarding your concerns. The Nova Scotia government is
concerned about citizens suffering from MS, and I want to reassure them
that we have their health and safety in mind as we make these difficult
I have spoken to Ms. Morse several times, as you refuse to speak with me. Ms. Morse was also the one that suggested I try to find a doctor in this province who could do the procedure. We found several. We also found that they were trained in the exact procedure for treating CCSVI. Of course you also know we found out that the province was paying to have these doctors and technicians secretly trained. If the Nova Scotia government was concerned about citizens suffering from MS, I would not be expending the energy in writing this reply.
Currently no province in Canada is offering this treatment or doing
clinical trials yet. Here in Nova Scotia, there are no doctors prepared
to provide this treatment.
This is a blatant lie. The media reported on Dr. Gerald MacKean and his assistant being trained to do the procedure. These are the only names that were given and we apologize that they had to be named, but your Executive Assistant should have relayed the information to you instead of leaving us to pass it along as we did. Or you should have done your job and spoken to me. The only reason other doctors were not named is because I do not think it is right that they should be harassed by 3000 patients trying to save their lives, when you are the one responsible.
At the recent Annual Health Ministers’ meeting, we agreed that the
best thing we can do at this point is to ask our staff to help
accelerate the research being recommended by the Canadian Institutes of
Health Research, without undermining the medical research. As Health
Ministers we want to be helpful, but require the medical and proven
scientific research and clinical results, before making decisions on
this important issue. We want to be sure that what we recommend is safe,
The meeting was a farce. The recommendations were taken from a panel of so-called experts all which have a vested interest in CCSVI not being offered. I also have to point out what your so-called experts are. They are readers. Nothing more. Every MS Neurologist became one by reading textbooks written by other doctors. Because this was written by doctors it is taken as Gospel. The part that you and others do not realize is that the information in those books, came from the interpretation that a doctor made about what his patients told him.
I have read these books. I know where the mistake were made. If a patient can not effectively describe the 'feeling' of the symptom, then the doctor makes an assumption. And like you have done in your role as Health Minister making the assumption that you were listening to the real experts, are also wrong.
The only true experts in Multiple Sclerosis are the people that suffer from the disease. This goes for any disease. In this day and age, most people know enough to get second opinions. Like Health Ministers, doctors make mistakes. It happens everyday and is usually the result of making an assumption. You ma'am are getting your information from the wrong source.
It is clear to me that we need that research to balance safety with the
need for new treatments. We want answers as quickly as possible, so that
we can collectively move forward to determining what is in the best
interests of MS patients.
It is clear to me that this province wants to move as slowly as possible in doing what is best for the people. It is no secret that Nova Scotia sits in the industrial armpit of North America. Our location is ideal for all of the airborne toxins from the west of Canada, as well as the Gulf Stream pushing the air up from the Eastern US Seaboard, to eventually swirl above Atlantic Canada until it is pushed to sea.
I have always been proud to be from Nova Scotia, our province has had a great history and we hold many great records. Unfortunately we also hold some not so great records. Because of our location we have some of the highest rates in the world for neurological disorders and cancers. One record that NS should not be proud of is having the highest incidences of MS in the world and a Health Minister that refuses to help patients.
Instead of being famous as the last province in the country to approve Lucentis, do you not think it is time that we do something right for the people for a change and maybe be the first province to help MS patients?
This approach is consistent with the North American panel of experts
assembled by the Canadian Institutes of Health Research and the Multiple
Sclerosis Society of Canada, who concluded in August that “there is
overwhelming lack of scientific evidence”.
There was overwhelming lack of scientific evidence that the H1N1 vaccine would work. There were no trials. Billions of dollars were spent. Like the feared pandemic, there was little effect. There are also no trials for the flu shots given out every year, yet that is allowed to happen. The angioplasty procedure that is used has been used for over 30 years. It is quick, safer than any drug without a trial, and very effective. It is preformed in Canada for heart patients to correct arteries, as well as used for kidney patients to correct veins. This is nothing new. The part that is new now in this country, is a patient that is diagnosed with MS and needs to have angio to correct a heart or kidney, will die because of stupidity.
While I was being treated for CCSVI a fellow patients also from NS was being treated. That treatment definitely saved her life. I will admit that her MS would not have killed her as fast as my own, but the blood clot they found during the procedure would have killed her. If the clot had come dislodged while she was in NS, she would be left to die because of YOUR position in thinking it is ethically proper.
A lot of hope has been placed on this treatment. I’m hopeful too, but
I realize we need to ensure appropriate trials are completed, and
evidence is available, before providing this treatment in Nova Scotia.
We have to ensure the treatment is safe for patients, and that it works.
We’re still quite early on in this process.
For the first time in 150 years, MS patients have been given hope. I agree, that nothing should be jumped into lightly especially when you are dealing with someone's life. With the attitude taken by the Neurological Societies being backed by the Health Minister's then the patients in this country will continue to suffer and die. The MS Clinics in this country have no desire to help the patients. Every trial they use try to prove or dis-prove the CCSVI theory, has been purposely designed to fail.
The Neurological Societies are being blinded and do not see the hidden potential available to them. The purpose of the CCSVI treatment has never been to cure Multiple Sclerosis. The purpose of the procedure is to slow or stop the progression in hopes a cure may be found. The treatment is only part of the solution. Patients that have had the treatment still have MS. Whether they admit it or not. In time they will need help.
With the attitude of some of the neurologists in the Halifax Clinic making comments such as, "Zamboni should have stuck to cleaning ice and not get into things he doesn't know.", to their patients, is beyond comprehension. What makes this doctor qualified to discredit another professional? This doctor is now finding out a valuable lesson. In sales, a cardinal rule is to never bad mouth a competitor. When you do, you will lose a customer.
Yet some of the pompous neurologists are finding out that this is exactly what happens.
While I recognize the severity of the health crisis you face, it would
not be ethical for me to agree to provide a procedure that is not
accepted by the medical profession.
Thank you for recognizing that I am going to die and that it is ethically right for you to let that happen. The procedure is already accepted by the medical profession or it would not be preformed in hospitals now. Your argument holds as much weight as any serial killer's argument. Denying someone the chance to live is criminal.
Because of my worsening condition, I was not able to use the law to my full extend. Surprisingly, a week after secretly left the country to have the procedure done, I find now that I do have the energy as well as no longer fearing that I will be dead by Christmas as you intended.
Having had the procedure done, I now know that we as patients need your help as well as the help of the MS Clinics more than anything. Because of this need, I have no choice but to remove my personal vendetta against you for trying to kill me. For now.
Thank you for writing to me and advocating on behalf of MS sufferers in
My initial correspondence to you was not advocating for all MS patients. It was a compassionate request which you ignored. Now I am advocating for everyone else. Other patients, friends, and even strangers made it possible for me to continue living. These, unlike the politicians in our government stealing from us as taxpayers, are not rich people. They can not afford to help pay $10-20,000 for a procedure that could be done here for less than $5000. But they have helped me and I am helping them. This is just a small taste of what we as patients have planned for you and your party.
As you are reading this now, people are looking through the financial records of you and your party members. We as patients have found out how much the MS Clinic neurologists get in perks from the pharmaceutical companies. Now we will find out how much our elected officials get for taking such a stance in their contributions. Recently the largest petition to ask for help was presented to the House. You and your party have ignored every request for help. Not surprisingly not one member in your party can look an MS patient in the eye.
You have the power to correct this. We have solutions. The longer you wait, the more embarrassing this will be for everyone but the patients. According to the statistics, over 125 people have been treated in this province so far and all will improve. That is more than enough for a trial. To date, we can identify at least 5 more patients in this province that will not live a year. I already know that you are prepared to murder these patients. I'm not prepared to let you do that.
A simple solution is for you to meet with me. I may bring a doctor, or another patient, to verify my findings. All I ask is you bring your experts and let us give our position. It can be called a debate, or a lesson, or even a focus group. Call it what you will, it will be the truth. I have asked that a media personality be involved to act as mediator if need be, as you can see from my reply, I am not hiding anything from anyone.
We have the information you and your experts need to hear. Having you both together at the same time will stop you from saying it is up to the Experts, and the head of the Halifax Clinic saying it is up to you.
As the Minister of Health, this is your call. I am hoping you make the right decision soon, at least before the movie comes out. One point to keep in mind, I will not let any politician get away with murder including a Minister of Health.
I will include your email address and phone number in case any of your constituents might like to also let you know you should take advantage of this opportunity.
My warmest regards and awaiting your speedy reply.
Honorable Maureen MacDonald (NDP)
Nova Scotia Minister of Health
1-800-387-6665 (toll-free in Nova Scotia)