Today I realized it has been close to one year since I first heard of CCSVI on CTV. I clearly remember my thoughts and feelings like they were yesterday. I also remember hearing that some neuros were saying that CCSVI was only another sham treatment and would soon fade away. It has been twelve months and CCSVI has not died. Close to 4000 MS sufferers, globally, have been treated for blocked veins and the number continues to rise.
CCSVI advocacy groups have popped up all across Canada, largely in part through social media. The MS Society has fumbled themselves into a deep dark corner throughout this entire time. I would have to say that this is one of the largest PR screw ups in history! I cant foresee them pulling out of this debacle unscathed.
After care seems to be a very grey area in Canada. Some Gp's and neuros have been reluctant to offer referrals to vascular specialists when a person returns home from their medical tourism. I have already heard a disturbing story of emergency after care being denied to a young man and his resulting death. I am told Avis Favarro is looking into this story.
The attitude towords CCSVI by the majority of the neurological community has been hostile at best. WHY this is, one can only speculate. Some say they will lose lucrative funding and kick backs from Big Pharma as people choose to go off their ineffective and often dangerous MS drug therapies after having angioplasty. It is true that Big Pharma stands to lose billions. I have often wondered if pharmaceutical companies were allowed to advertise on Canadian TV, CCSVI might not have received the media coverage it has. The US allows Big Pharma to advertise. Every other commercial is an add for some kind of drug. Notice the blackout on US television when it comes to CCSVI. Makes you wonder.
Both Ashton Embry of Direct-MS and Dr. Zamboni has been doing their best to dispel the lies that have been circulating throughout many governments and their health care systems. I laughed out load when each of them wrote to our health care people and point by point shot down their position statement on why we are not allowed to have angio.
Our Canadian Government has been willingly duped by the naysayers into believing that treating an MS sufferer for blocked veins is unethical and dangerous. Any other tax paying Canadian citizen can have angioplasty on their blocked jugulars and it is covered by Provincial Health Care. Kidney dialysis patients suffer from collapsing jugulars as a result of their treatments and they are allowed angio to unblock them. Victims of car and motorcycle collisions also are eligible for angio.
Currently some well meaning politicians have pushed for funding for clinical trials in Canada. The sad truth of the matter is this is just a waste of money and time. Enough research is already going on all around the world. Why would we waste precious time and money like this? The naysayers want to see this happen so they can conduct the studies themselves and prove CCSVI doesn't help MS. This is all just a great big stall tactic that benefits our current health care system. Can you imagine if they okayed scanning and treatment tomorrow? I think our government is scared shitless of what this would do to our already overloaded system. Our current Global Health Care system would fall apart. Time for a better system anyway!
Despite all the roadblocks being thrown at us by naysayers folks are continually opting to have the treatment through medical tourism. On average a person spends around $10,000.00 and that money is not going into our own economy, unfortunately. Although, if we did do the treatment here and had to pay out of pocket for it, estimates of $1,500.00 to $2,000.00 CAD is a more realistic figure for our country. The US is doing the procedure and taking Canadians money. Just think how much money Canada could generate if we offered this treatment too? Just think how many thousands of tax paying MS sufferers could have a shot at a better quality life?
No more trials or studies. CCSVI is a vascular condition. Whether it is related to MS is neither here nor there. Blocked veins are unhealthy. Kidney dialysis patients arent told to rely on their collateral veins when their jugulars collapse. Why are we? It is unethical and inhumane to withhold this treatment from us any longer.
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I agree.Testing and studies of a proven procedure are a waiste of time and money.Unfortunatly in this circumstance also a waiste of human life.Frustration and anger are the only compaions of this miscarage of justice.
ReplyDeleteThank you Ginger...! My sentiments EXACTLY!
ReplyDeleteYup, I couldn't have said it any better Ginger! Thanks :)
ReplyDeletewell said girl!
ReplyDeleteI don't have a problem with another study, it just needs to be big enough to be meaningful....say 70,000 people.
ReplyDeleteI think that would about do it!!
You've sure got the right words, Ginger :)
ReplyDeleteWell done Ginger, I totally agree with your summary, too bad common sense seems to be a scarce and hard thing to come by...very sad.
ReplyDeleteperfectly said Ginger!! Send it to Ujjal Dosangh, let us see if he is as caring a health critic as Kirsty Duncan!
ReplyDeleteThank you Ginger well said, now they need to get with the program and treat ccsvi!!!!!
ReplyDeleteThanks for the blog; well written.
ReplyDeleteI think 70,000 is a stretch, uber-expensive and an astronomical number. Here's why:
ReplyDeleteBotox finally got approved for chronic migrane treatments with studies done on just over 1700 people - despite a control group that showed pretty similar results to the trial group.
In fairness, we all know that something funky is going on with these veins in many people with MS. What we don't really know is the best method to treat, the long-term effects, the effects on repeaters -- or why not everyone presents stenosis.
Clear and powerful.
ReplyDeleteNow we need the "ears" of the "powers" that be.
"They" need to listen with their metaphorical hearts and their free flowing not "blocked" missing or stenosed veins which begs the question...who is more compromised..by restrictions..is it indeed us or them??
More than sad.
Thanks for your beautiful voice and energy Ginger!!!
Ginger, but what about your health, progress, etc
ReplyDeleteWell done Ginger, I don't know why they don't get it, but they don't, so all we can do is keep educating more people. The more the merrier and it all starts with great people, like you.
ReplyDeleteJust a question: does anybody know if dialysis patients who have blocked jugulars experience MS symptoms??? I'm no expert in medicine, but if people with dialysis do experience MS symptoms when they have blocked jugulars then it would really support the claim that MS is linked with blocked jugular veins. If not, there really needs more investigating and then we are back to square 1: MS is neurological.
ReplyDeleteThis is the exact reason for how we found out that schizophrenia is related to high dopamine levels--> people taking amphetamines also experience high dopamine levels AND schizophrenia like symptoms.
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
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