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N.B. to fund vein surgery for MS patients

Premier keeps promise despite death of Ontario man


 

New Brunswick Premier David Alward announced his government will create a $500,000 fund to help MS patients seeking controversial vein-opening surgery abroad. Chronic cerebrospinal venous insufficiency (CCSVI) treatment is not approved by Health Canada, nor is it funded by any provinces, so many Canadians are buying the surgery in other countries. The procedure involves opening the neck vein to allow blood to flow back to the heart that might otherwise pool in the brain. Italian researcher Dr. Paulo Zamboni believes that blood pooling in the brain is the cause MS in many people. Zamboni, who was in Ottawa Tuesday to plead for CCSVI treatment, saw impressive results in his small study of 100 patients. Many patients who were wheelchair bound could walk again and the results lasted more than a year in many cases. However, there have not yet been large or rigorous enough trials to convince the medical establishment in North America that the treatment is safe and effective. Despite their caution, Alward promised access to CCSVI treatment during his fall election campaign. The announcement that he’ll keep that promise comes just days after Canadians learned that a St. Catharines, Ont. man, Mahir Mostic, died of complications from a CCSVI treatment he received in Costa Rica. Alward said he spoke to a friend with MS since Mostic’s death, who told him “don’t give up the fight,” for access to the surgery.

CBC News


 
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N.B. to fund vein surgery for MS patients

  1. I'm sure the NB gov't will have no liability whatsoever if things go wrong when they are paying for people to travel Costa Rica or India to private clinics who are preying on the desperation of vulnerable MS patients. NB doctors won't endorse the procedure yet because of the scant research. 65 patients not 100 patients and only 1/3 received some positive benefit after 18 months. 1/3 no benefit, 1/3 symptoms returned. What a great investment New Brunswick- spend that $500,000 on treatments for things that are proven to work please!!!!!!

  2. My father, who was in an advanced state of MS, just had the procedure done in Europe. It has changed our lives for the better. We had nothing to lose. My father was dying and trapped in his body. Hope and life has been restored to us.
    This is the case for many MS sufferers.
    It is more costly to keep MS patients in longterm care. I don't hear anyone worrying about MS patients dying of bedsores, bladder infections and choking. The drugs cost more that 1400 plus monthly. People who do not have MS should not be making this choice. People who are immobile would even take the 1/3 chance that they can move again. (though everyone I know who has taken this chance has gained immeasurably). Walk in the shoes of an MS sufferer or the families that care for them. BTW our treating hospital is world renowned, not some private third world clinic.

  3. My father, who was in an advanced state of MS, just had the procedure done in Europe. It has changed our lives for the better. We had nothing to lose. My father was dying and trapped in his body. Hope and life has been restored to us.
    This is the case for many MS sufferers.
    It is more costly to keep MS patients in longterm care. I don't hear anyone worrying about MS patients dying of bedsores, bladder infections and choking. The drugs cost more that 1400 plus monthly. People who do not have MS should not be making this choice. People who are immobile would even take the 1/3 chance that they can move again. (though everyone I know who has taken this chance has gained immeasurably). Walk in the shoes of an MS sufferer or the families that care for them. BTW our treating hospital is world renowned, not some private third world clinic.

  4. Donna:

    Your statistics are irresponsible and suspect at best. Pulling them out of the air to fuel the fear mongering. Preying upon innocent victims at their time of greatest need. Read what Diane said to learn what liberation means to real people. I applaud Alward's courage. The signs of a true leader and a human being.

  5. Donna:

    Your statistics are irresponsible and suspect at best. Pulling them out of the air to fuel the fear mongering. Preying upon innocent victims at their time of greatest need. Read what Diane said to learn what liberation means to real people. I applaud Alward's courage. The signs of a true leader and a human being.

  6. I agree that most MS sufferers are desperate for a cure and I sympathize greatly with that fact. If i had MS i would do everything I could to try and make myself better, even if it were only for a short period.

    But I don't think that tax payers should be footing a bill at this point. Wait until the research is finished and then if the results are positive then Canadian tax payers should fund it. At this point the government shouldn't be paying to send people out of country to have this operation performed when the benefits and risks are not fully understood.

  7. I agree that most MS sufferers are desperate for a cure and I sympathize greatly with that fact. If i had MS i would do everything I could to try and make myself better, even if it were only for a short period.

    But I don't think that tax payers should be footing a bill at this point. Wait until the research is finished and then if the results are positive then Canadian tax payers should fund it. At this point the government shouldn't be paying to send people out of country to have this operation performed when the benefits and risks are not fully understood.

    • not everyone has the time to wait to see whether or not this research is the actual cure. i'm a 26 year old mom i also have the progressive ms i want a cure so bad it's not even funny. I would do anything to get my life back. even if it only last a little bit. Not everyone has a whole lot of money to just fork over to pay for this operation that costs an arm and a leg. At least NB is giving a new hope to the ones that live there. It would be even nicer if all the provinces would come together and fight as one against the health government to get this procedure available in canada. I know what this disease can do to me, i've seen it with others. I want to be me. And I strongly agree that without this surgery that'll never happen. Kudos to the ones that were able to get this surgery. And i'm sure if you were to ask if they would do it again they would say yes in a heart beat. Keep in mind this disease doesn't wait, we cant wait either.

  8. Canadian taxpayers are funding people with MS anyways. Do you think that the average person can pay the enormous monthly bills for medication or for hospitalization or for long term care? We pay for that through our taxes. Why not help them get better? This seems a lot more reasonable to my way of thinking and it is what I would certainly want for myself or any member of my family unfortunate enough to suffer from MS.

  9. Canadian taxpayers are funding people with MS anyways. Do you think that the average person can pay the enormous monthly bills for medication or for hospitalization or for long term care? We pay for that through our taxes. Why not help them get better? This seems a lot more reasonable to my way of thinking and it is what I would certainly want for myself or any member of my family unfortunate enough to suffer from MS.

    • Entièrement d'accord avec vous, si les contribuables savait le montant qui sort directement de leurs poches, je crois que la population serait plus réceptive au traitement de Zamboni, si il font les angio au Nouveau-Brunswich, je suis partante même si je devait payer, j'aimerais mieux le faire près de chez-moi qu'à l'autre bout de monde, si jamais Judy vous aviez des développements pour le Nouveau-Brunswick TELL ME PLEASE

    • Sorry, but CCSVI is hardly "junk science"!! My husband's veins were 85 and 95% blocked and now have been cleared. His symptoms are abating. He no longer takes MS medications which were causing him harm.

      • The plural of anecdote is not data.

        • Yeah, just disregard everyone who's healthy again as a result instead. That's pseudo-intelligence for you.

          • Actually, it's rather hard to judge a result when the isease itself can be known as "relapsing-remitting". If your lovd one feels better after treatment, is it placebo, is it the treatment, or is it the relapsing stage? Is your spouse coming out of a flare? How can anyone tell?

            Before you ask, my wife has MS. She's tired of talking on forums where she keeps being accused of working for big pharma, stupidity or self-hatred because she wants to see if this stuff actually works before she joins the line-up.

            She has a science based medical education, and treated cancer patients before she had to stop working. She's a big believer in evidence, not you-tube videos.

          • I agree that we should believe in evidence, but the evidence that I have is that my husband has been diagnosed with "secondary progressive" MS, and the neurologists at the clinic have told him that at this point they have nothing that they can do for him, except to manage his symptoms, with drugs. I am not for or against drugs at all, however, by the time they give him a drug for this, and a drug for that, and a drug for every other thing, he is a walking molotov cocktail. How can this be good for him? Without any advancements in research, we don't have much to look forward to.

            Comment 1 of 2

          • Comment 2 of 2
            As to waiting for evidence, we have been waiting, and so far we have not seen a study underway to see if the treatment works or not. All of the studies proposed and supported by the MS Society have been in relation to vein abnormalities, not one treatment study.

            So I applaud the decision of New Brunswick to help fund people going out of the country for treatment, hopefully some researcher somewhere is going to be smart enough to make sure that people who apply to be funded for this treatment will receive follow up care and follow up for research purposes here in Canada.
            http://mssociety.ca/en/releases/nr_20100611.htm

    • Zamboni n'est pas un mythe mais un médecin…Wake up

    • Mr Rose, Or Dr Rose? For you to call a world renowned and respected Doctor a charlatan is very unprofessional and reduces your credibility by many degrees. You should take your head out of the sand and do a little bit of research. You have clearly missed quite a few developments over the last 12 months. This may end up hurting you professionally if you refuse to act like a professional in regards to your uninformed statements. I have not read your blog but if I do I am sure I will be unimpressed judging from what I have seen here. I wish you luck in the future and I fear you may need it to be successful.

      • If anyone is unprofessional it`s Zamboni. He used his wife as a guinea pig for an uproven, potentially hazardous treatment. Zamboni is a varicose vein surgeon and was far from "renowned" in the medical profession until Avis Favaro of CTV, who has zero scientific or medial training, pulled his scientifically absurd paper from the dumpster of medicine and proclaimed a "breakthrough" in MS treatment and lauched the "CCSVI" hysteria which has cost MS patients and MS organizations at least $one billion and counting.

        • Sorry Rose you have earned yourself O credibility by slaming another Doc on a public forum. I not sure why you would take such a contrary stand on something as this. you have a lot to lose including your licence if you have one. I just checked you out on Doctor reviews( http://www.ratemds.com/doctor-ratings/1491982/Dr-… you are not doing so well. To me you just seem to be an angry out of touch has been.

  10. Well said.

  11. Well said.

  12. I agree with Diane, please live just one day in the life of a MS person. I also had the procedure done, I was going down hill fast, time was not on my side. There is no way I was going to have my children care for me 24 hours a day or be part of long-term care with tubes coming out of me. My scans prior were not good, my veins were bad. My family and friends have noticed a huge change, a re-birth almost. Even if this only last a year, I would do it again in a heartbeat. Just to have the MS halted & my energy level increase was worth it. Congrats to Alwards, do we have any more Champions out there?

  13. I agree with Diane, please live just one day in the life of a MS person. I also had the procedure done, I was going down hill fast, time was not on my side. There is no way I was going to have my children care for me 24 hours a day or be part of long-term care with tubes coming out of me. My scans prior were not good, my veins were bad. My family and friends have noticed a huge change, a re-birth almost. Even if this only last a year, I would do it again in a heartbeat. Just to have the MS halted & my energy level increase was worth it. Congrats to Alwards, do we have any more Champions out there?

  14. MS is hell. But it may be wiser to have the procedure scientifically vetted first. Anecdotal evidence is nothing to base a decision on. N.B. may be open to litigation if they have made a bad decision. I hope the procedure is proven effective and safe

  15. Sorry, but CCSVI is hardly "junk science"!! My husband's veins were 85 and 95% blocked and now have been cleared. His symptoms are abating. He no longer takes MS medications which were causing him harm.

  16. The plural of anecdote is not data.

  17. Yeah, just disregard everyone who's healthy again as a result instead. That's pseudo-intelligence for you.

  18. not everyone has the time to wait to see whether or not this research is the actual cure. i'm a 26 year old mom i also have the progressive ms i want a cure so bad it's not even funny. I would do anything to get my life back. even if it only last a little bit. Not everyone has a whole lot of money to just fork over to pay for this operation that costs an arm and a leg. At least NB is giving a new hope to the ones that live there. It would be even nicer if all the provinces would come together and fight as one against the health government to get this procedure available in canada. I know what this disease can do to me, i've seen it with others. I want to be me. And I strongly agree that without this surgery that'll never happen. Kudos to the ones that were able to get this surgery. And i'm sure if you were to ask if they would do it again they would say yes in a heart beat. Keep in mind this disease doesn't wait, we cant wait either.

  19. If they could only invent a special stent for more fragile and superficial veins and not use stents designed for thicker deep setted arteries, there might be a chance for benefits to last longer with less risks for a stent collapse, hemorraging, and more blockages. It is also more important to address the root cause of MS, I do not think vein blockage is it. A portion of the population, whose veins are blocked, are not suffering from MS.

  20. If they could only invent a special stent for more fragile and superficial veins and not use stents designed for thicker deep setted arteries, there might be a chance for benefits to last longer with less risks for a stent collapse, hemorraging, and more blockages. It is also more important to address the root cause of MS, I do not think vein blockage is it. A portion of the population, whose veins are blocked, are not suffering from MS.

  21. Actually, it's rather hard to judge a result when the isease itself can be known as "relapsing-remitting". If your lovd one feels better after treatment, is it placebo, is it the treatment, or is it the relapsing stage? Is your spouse coming out of a flare? How can anyone tell?

    Before you ask, my wife has MS. She's tired of talking on forums where she keeps being accused of working for big pharma, stupidity or self-hatred because she wants to see if this stuff actually works before she joins the line-up.

    She has a science based medical education, and treated cancer patients before she had to stop working. She's a big believer in evidence, not you-tube videos.

  22. Entièrement d'accord avec vous, si les contribuables savait le montant qui sort directement de leurs poches, je crois que la population serait plus réceptive au traitement de Zamboni, si il font les angio au Nouveau-Brunswich, je suis partante même si je devait payer, j'aimerais mieux le faire près de chez-moi qu'à l'autre bout de monde, si jamais Judy vous aviez des développements pour le Nouveau-Brunswick TELL ME PLEASE

  23. Zamboni n'est pas un mythe mais un médecin…Wake up

  24. I had angioplasty in Germany and it is the best thing that has ever happened to my MS. I too had blockages of 95% and 80%. I am part of a study in Frankfurt and I look forward to the results one day. I love the energy to be able to walk, talk, play, live again. The best thing I have ever done for myself and my family. I hope the research becomes available soon, so Canada can follow suit.

  25. I had angioplasty in Germany and it is the best thing that has ever happened to my MS. I too had blockages of 95% and 80%. I am part of a study in Frankfurt and I look forward to the results one day. I love the energy to be able to walk, talk, play, live again. The best thing I have ever done for myself and my family. I hope the research becomes available soon, so Canada can follow suit.

  26. The numbers you stated are wrong. No one is paying for anybody to go to Costa Rica or the US or anywhere else. The research is scant because the enticements from Big Pharma are too hefty to decline. You have no idea how many people have been treated from your own country, let alone globally. Had Canada picked up the ball much earlier on, more than a few lives could have been spared.NB does not endorse the procedure because they won't risk upsetting the status quo. After all, they aren't in constant pain or riding around in wheelchairs. They probably don't wake up at night screaming in pain from muscle spasticity either.MS is progressive , relentless and dehumanizing.I know, I suffered with it for over 15 years. I had the procedure and have gone from an EDSS score of 7.9 to trace clinical symptoms.If you must speak out, please know something about the people you degrade with "vulnerable" and "desperate". You might become a trifle upset if you needed home health care also. The fact that it costs $3,000 a month per patient to be on disease modifying medications that don't work might make you reconsider where your taxes really go in the traditional treatments of MS. Been there, done that and I am no longer a burden to anyone. BTW, estimates of the procedure are around 6,000 people, in case you are interested.

  27. The numbers you stated are wrong. No one is paying for anybody to go to Costa Rica or the US or anywhere else. The research is scant because the enticements from Big Pharma are too hefty to decline. You have no idea how many people have been treated from your own country, let alone globally. Had Canada picked up the ball much earlier on, more than a few lives could have been spared.NB does not endorse the procedure because they won't risk upsetting the status quo. After all, they aren't in constant pain or riding around in wheelchairs. They probably don't wake up at night screaming in pain from muscle spasticity either.MS is progressive , relentless and dehumanizing.I know, I suffered with it for over 15 years. I had the procedure and have gone from an EDSS score of 7.9 to trace clinical symptoms.If you must speak out, please know something about the people you degrade with "vulnerable" and "desperate". You might become a trifle upset if you needed home health care also. The fact that it costs $3,000 a month per patient to be on disease modifying medications that don't work might make you reconsider where your taxes really go in the traditional treatments of MS. Been there, done that and I am no longer a burden to anyone. BTW, estimates of the procedure are around 6,000 people, in case you are interested.

  28. Mr Rose, Or Dr Rose? For you to call a world renowned and respected Doctor a charlatan is very unprofessional and reduces your credibility by many degrees. You should take your head out of the sand and do a little bit of research. You have clearly missed quite a few developments over the last 12 months. This may end up hurting you professionally if you refuse to act like a professional in regards to your uninformed statements. I have not read your blog but if I do I am sure I will be unimpressed judging from what I have seen here. I wish you luck in the future and I fear you may need it to be successful.

  29. If anyone is unprofessional it`s Zamboni. He used his wife as a guinea pig for an uproven, potentially hazardous treatment. Zamboni is a varicose vein surgeon and was far from "renowned" in the medical profession until Avis Favaro of CTV, who has zero scientific or medial training, pulled his scientifically absurd paper from the dumpster of medicine and proclaimed a "breakthrough" in MS treatment and lauched the "CCSVI" hysteria which has cost MS patients and MS organizations at least $one billion and counting.

  30. You should'nt loose your time to write to this "Dr" Rose. We just have enough of him. Don't know how come doctors like that have time to write on every blog, FB pages (which he was banned from many), every articles… get a life Mister and just leave us alone!

  31. You should'nt loose your time to write to this "Dr" Rose. We just have enough of him. Don't know how come doctors like that have time to write on every blog, FB pages (which he was banned from many), every articles… get a life Mister and just leave us alone!

    • The reason Colin Rose was banned from many pro-CCSVI pages was he pointed out flaws in the theory of CCSVI and that many independent researchers that could not replicate Dr. Zamboni's results. I guess speaking the truth is the worse kind of heresy.

  32. I was diagnosed with primary progressive ms in 2007. I know 3 people personally who have undergone angioplasty, all have varying degrees of positive change which have occurred since the procedure. None have had any negative effects to date. As I’m on the waiting list for the procedure, I’m keeping a close eye on the developments of the various trials and of my friends status.

  33. I was diagnosed with primary progressive ms in 2007. I know 3 people personally who have undergone angioplasty, all have varying degrees of positive change which have occurred since the procedure. None have had any negative effects to date. As I’m on the waiting list for the procedure, I’m keeping a close eye on the developments of the various trials and of my friends status.

  34. Sorry Rose you have earned yourself O credibility by slaming another Doc on a public forum. I not sure why you would take such a contrary stand on something as this. you have a lot to lose including your licence if you have one. I just checked you out on Doctor reviews( http://www.ratemds.com/doctor-ratings/1491982/Dr-… you are not doing so well. To me you just seem to be an angry out of touch has been.

  35. When it comes to access to unapproved drugs for life-threatening illnesses such as MS, Dr. Supriya Sharma says:

    “We also have to balance when patients have access to it, because delaying access to something that could potentially be a benefit also has risks associated with it" http://www.healthzone.ca/health/newsfeatures/canc
    and they keep the approval process a secret!

    When it comes to drugs which are not approved and may kill people and may take up to 7 yearsfor the drug to get approved, they have to provide it to patients, but when it is about a cheap, no risk angio, they have ETHICS.

    SHAME ON YOU CANADA

  36. When it comes to access to unapproved drugs for life-threatening illnesses such as MS, Dr. Supriya Sharma says:

    “We also have to balance when patients have access to it, because delaying access to something that could potentially be a benefit also has risks associated with it" http://www.healthzone.ca/health/newsfeatures/canc
    and they keep the approval process a secret!

    When it comes to drugs which are not approved and may kill people and may take up to 7 yearsfor the drug to get approved, they have to provide it to patients, but when it is about a cheap, no risk angio, they have ETHICS.

    SHAME ON YOU CANADA

  37. I wish I knew how to get to be one of the people here (Canada) to do research. My son is praying for help. He has MS.
    And apparently Donna you can't have MS or have a sibling with it. I am watching my son's hope die.

  38. I wish I knew how to get to be one of the people here (Canada) to do research. My son is praying for help. He has MS.
    And apparently Donna you can't have MS or have a sibling with it. I am watching my son's hope die.

  39. Mahir Mostic died because Ontario doctors would not treat the blood clot in his stent. Do they not know how? Instead they made him fly back to Costa Rica which is the worst thing possible for a blood clot. He died of complications from the medication they gave him in Costa Rica to dissolve the clot. Had that treatment been done in Ontario, he would not have died. His death was caused by the failure of the Canadian medical system. If Canada wants to say no angio for people with MS then no angio for anyone.
    I am sick of paying the taxes I pay and the price I have to pay for electricity in this country for no medical care. I am on the list also to have this done. We Canadians are on the long list because we do no have insurance. It makes you feel like a peasant.

  40. Mahir Mostic died because Ontario doctors would not treat the blood clot in his stent. Do they not know how? Instead they made him fly back to Costa Rica which is the worst thing possible for a blood clot. He died of complications from the medication they gave him in Costa Rica to dissolve the clot. Had that treatment been done in Ontario, he would not have died. His death was caused by the failure of the Canadian medical system. If Canada wants to say no angio for people with MS then no angio for anyone.
    I am sick of paying the taxes I pay and the price I have to pay for electricity in this country for no medical care. I am on the list also to have this done. We Canadians are on the long list because we do no have insurance. It makes you feel like a peasant.

  41. So far no independent researchers have replicated Dr. Zamboni's initial findings, in fact Dr. Wattjes a neurointerventional surgeon ( angioplasty ), published a study in the Journal of Neurology, Neurosurgery and Psychiatry and found variations in cerebral venous drainage in both MS patients and healthy control subjects. This variability could have fooled Dr. Zamboni into thinking they were blockages instead of the normal variation of venous anatomy. Thus no evidence seems to exist for CCSVI, much less a connection to MS. It is dangerous to treat people for a condition that does not exist.

  42. So far no independent researchers have replicated Dr. Zamboni's initial findings, in fact Dr. Wattjes a neurointerventional surgeon ( angioplasty ), published a study in the Journal of Neurology, Neurosurgery and Psychiatry and found variations in cerebral venous drainage in both MS patients and healthy control subjects. This variability could have fooled Dr. Zamboni into thinking they were blockages instead of the normal variation of venous anatomy. Thus no evidence seems to exist for CCSVI, much less a connection to MS. It is dangerous to treat people for a condition that does not exist.

  43. I agree that we should believe in evidence, but the evidence that I have is that my husband has been diagnosed with "secondary progressive" MS, and the neurologists at the clinic have told him that at this point they have nothing that they can do for him, except to manage his symptoms, with drugs. I am not for or against drugs at all, however, by the time they give him a drug for this, and a drug for that, and a drug for every other thing, he is a walking molotov cocktail. How can this be good for him? Without any advancements in research, we don't have much to look forward to.

    Comment 1 of 2

  44. Comment 2 of 2
    As to waiting for evidence, we have been waiting, and so far we have not seen a study underway to see if the treatment works or not. All of the studies proposed and supported by the MS Society have been in relation to vein abnormalities, not one treatment study.

    So I applaud the decision of New Brunswick to help fund people going out of the country for treatment, hopefully some researcher somewhere is going to be smart enough to make sure that people who apply to be funded for this treatment will receive follow up care and follow up for research purposes here in Canada.
    http://mssociety.ca/en/releases/nr_20100611.htm

  45. The reason Colin Rose was banned from many pro-CCSVI pages was he pointed out flaws in the theory of CCSVI and that many independent researchers that could not replicate Dr. Zamboni's results. I guess speaking the truth is the worse kind of heresy.

  46. How many Canadians have had the treatment ?

    How many have benefited ?

    How many have not ?

    Isn't anybody asking the obvious ????

  47. How many Canadians have had the treatment ?

    How many have benefited ?

    How many have not ?

    Isn't anybody asking the obvious ????

  48. As always the big boys are keeping life saving proceedures out of our country. Way to go NB Gov be a responsible Government.
    ADay

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