The First Fatality of the Liberation War

[Direct-MS]

I was greatly saddened by the death of Mahir Mostic due to complications following CCSVI treatment. My children are about the same age as Mr Mostic and I can only imagine the devastating grief his loved ones must be experiencing. My deepest sympathies go out to his family and friends.

There has been a great deal of publicity surrounding this tragedy and, not surprisingly, there has been a lot of blame thrown around. I thought it would be worthwhile to examine the facts of the case in order to see what went wrong and how we might reduce the chances of another fatality related to CCSVI treatment occurring.

I have tried to construct a sequence of the main events from the various new stories and I must emphasize that they might not be completely accurate given the source materials. Mr Mostic was treated for venous blockages in Costa Rica in June, 2010 and, as part of his treatment, he had a stent emplaced in a jugular vein. He experienced some clotting problems before returning to Canada and had them resolved at the clinic with blood thinners. A few months after his return to Canada, he started feeling badly and assumed it was due to a venous problem related to his CCSVI treatment. He sought medical help in Canada, including at least one visit to an emergency department at a St Catharines, Ontario hospital but unfortunately did not receive any treatment, in part (perhaps mainly) due to the fact he had an unsanctioned procedure outside of Canada. In October, he flew back to the vascular clinic in Costa Rica and he was treated with blood thinners. This resulted in uncontrollable haemorrhaging and Mr Mostic died.

The big question is not “who is to blame” but rather it is “how might have Mr Mostic’s death been prevented”. Clearly, if he had not sought CCSVI treatment, he would not have died in the way he did. However, it is easy to understand why Mr Mostic sought such a treatment given that his MS was progressing and his neurologist had no worthwhile treatment to offer him. There is no doubt that CCSVI treatment has significantly helped thousands of persons with MS and there have been almost no serious adverse effects from the treatment after over 12,000 procedures. Thus, Mr Mostic understandably chose to have an established, very safe and potentially beneficial procedure in an effort to relieve some of the progressing symptoms of MS.

I have no doubt that tens of thousands of persons with MS will make exactly the same decision in the coming 12 months for the very same reasons. From a purely logical and scientific point of view, seeking CCSVI treatment is the best decision a person with MS can make, especially given the ineffectiveness of the current drugs for slowing MS progression and the potentially lethal side effects of some of them (e.g. Tysabri, Gilenia).

Given what we know about the events leading up to Mr Mostik’s death, it would appear that the largest problem was the lack of any treatment by Ontario physicians. It is not known at this time if they outright refused to provide any assistance or simply did not know how to treat a blood clot associated with a venous stent. Regardless, the failure of the Canadian health care system to properly treat Mr Mostik is undoubtedly the largest factor in his death and thus this is the one that needs to be addressed if future deaths associated with very rare, adverse side effects of CCSVI treatment are to be prevented or at least minimized.

The most reasonable solution is for MS neurologists to take their heads out of the sand and to accept reality. They need to feel fine about their patients undergoing a potentially very beneficial treatment and, most importantly, they need to ensure their patients get good medical care following their return from CCSVI treatment. The current attitude and actions of many MS neurologists who denigrate both venous angioplasty and persons who get such treatment are completely unacceptable and are materially contributing to the current situation of inadequate follow up care for persons with MS who get CCSVI treatment. MS neurologists need to do some soul searching about their professionalism when it comes to CCSVI and need to remember that they are expected to put the health of their patients ahead of their personal prejudices.

I am sure some neurologists will use this devastating death to try to convince their MS patients not to seek CCSVI treatment. Along these lines, it was not surprising to see the most vilified neurologist in the world, Mark ‘it’s a hoax” Freedman, callously use Mr Mostik’s death as a soapbox for baseless fear-mongering (“the risks, we’ve been saying, are significant”, “the treatment is..dangerous”) and adolescent mocking of persons with MS (“the things they used to do, like pour ointments on themselves and wear bracelets, didn’t really hurt them”). There is no doubt he is beyond any hope when it comes to a rational, caring attitude towards persons with MS who have had CCSVI treatment. However, I am optimistic that other MS neurologists in Canada will do what is best for their MS patients now that the problem of the lack of adequate follow up care for CCSVI treatment has turned deadly.

In summary, it is most unfortunate that the Liberation War, which is being fought between persons with MS and MS neurologists/MS societies, has resulted in a fatality. Mr Mostic’s death was a preventable tragedy which hopefully will raise the awareness of MS neurologists that they must ensure their MS patients get good health care following their return from CCSVI treatment.

I realize the Liberation War will continue for the foreseeable future because, when it comes to CCSVI, it is not in the best financial interests of MS neurologists and MS societies, and their pharmaceutical masters, to act in the best interests of those with MS. Thus they disparage CCSVI treatment, falsely claim such treatment is dangerous, and work hard to delay the necessary CCSVI treatment trial research for as long as possible (truth is the first casualty of any war). From a purely monetary point of view, there are ten billion reasons why such actions are understandable. However, it is critical that MS neurologists draw the line at supporting MS patients following CCSVI treatment because, as we have just witnessed, it is a matter of life and death.

[garyak]

Some real negatives here are that this story has had so much inacurrate media reports surround it. I can see that it's an obvious sensational story from the media's perspective but some of the articles I have read were poorly written.
The MD's in Canada should obviously have done their best to treat him here.
The Dr. "it's a hoax" ney sayers have all the ammo they need now.
Oh, wait, isn't he going to be involved in an ms society of canada's research study into ccsvi?

[David1949]

The situation in Canada can't get much worse with regard to CCSVI.
1)The Canadian health care system which provides medical care for any other condition won't provide venoplasty for CCSVI, even though there are doctors there who are qualified to do it.
2) Furthermore they won't allow Canadians to pay for the treatment themselves in Canada.
3) And now apparently they won't provide follow up care for anyone who had the procedure outside the country.
They only way it could get worse is if they ban Canadians from leaving the country for treatment.

In the US though, the procedure is legal... for now. But this incident could cause the FDA to decide that they have the authority to ban it. And the FDA is probably subject to the same pressures from drug companies as the Canadian government.

At the moment the holdup in the US seems to be not the FDA or the government, but the Institutional Review Boards, IRBs, at each hospital. Those boards already seem to be anti-CCSVI and this death may cause them to become even more so. The IRBs are probably also feeling pressure from the drug companies, so they might decide to nix CCSVI treatment for Doctors associated with the hospital. We'll just have to see what happens.

[cheerleader]

David--
the FDA cannot ban angioplasty for central venous stenosis. It's a known disease, covered by insurance in the US. That won't change. And the Hubbard IRB is allowing the IRs who are interested in testing and treating utilizing the Haacke protocol to participate. The three clinical trials (soon to be 4) in the states will provide more data. We'll be OK in the states. The problem in Canada is dicier, since those previously diagnosed with MS cannot be treated for central venous stenosis. And if they travel for angioplasty, there is no guarantee for followup. This appears to be a discriminatory move, and Angioplasty for All is pursuing a lawsuit on this:
http://www.angioplastyforall.com/
cheer

[Johnson]

You can bet that the situation in Canada is about to change. Mr. Mostic's sad demise will be the catalyst.

ERs will, and do provide emergency care if one has been treated outside of Canada, and with all due diligence and urgency. I can attest to that. I went to ER on Friday (in Vancouver) with suspicion of a clot forming at my angioplasty site. They did not care that I have "MS", nor did they care that I have had treatment in Poland. They cared that I might be in danger, and investigated fully. I was told to return immediately if there were any further issues, and today I had a call from the ER physician asking me how I was, and to come in for a check-up. They did another complete work-up on me - including a consultation with a vascular surgeon. There is also the nurse from Hamilton who attended McMaster University Hospital, and had her clotted stent issues resolved. St. Catharines, Ontario is a bit of a back-water town, and the hospital there is nothing to trumpet about (I have personal experience there).

I can see ER physicians, GPs, etc. putting a lot of pressure on the system to do something as more and more people show up with issues. I think that we are at an inflection point, and gov't mandated and funded treatment studies cannot be so far away. There are ~75,000 people with "MS" in Canada, and as we go over-seas for an unproven treatment, and start showing up at ERs in the tens of thousands, there will be no choice but to either prove the treatment ineffective, or start providing treatment and follow-up in Canadian facilities, by Canadian doctors.

The elephant in the room is very pregnant.

[MarkW]

I am not involved in a 'Liberation War'. Rather I am working to help pwMS with sufficients funds to obtain a symptomatic therapy - BVS (ballooning for venous stenoses) for a condition - EVS (extracranial venous stenoses) which is diagnosed using selective venography.
I hope that reducing the temperature of the debate will move us forward.

Canadians probably want to question why their health service does not treat Canadians with medical issues caused by therapy outside Canada. In the UK our National Health Service would treat such a person. They have been critised for correcting errors in gastic band operations in the past.

I caution against use of stents in veins unless the surgeon is a world class expert.

My thoughts and condolences go to Mr Mahir Mostic's family and friends.

MarkW

[Blaze]

The elephant in the room is very pregnant.

By now, I think the elephant must be pregnant with triplets--or maybe even quadruplets.

An elephant's pregnancy is usually 18-24 months. Considering it has been a year since CTV and Globe and Mail broke this story in Canada, we may have another 6 to 12 months of pregnancy before we finally give birth!

[Cece]

When the metaphor of war came up in Dr. Sclafani's thread, we agreed that the war was against the outflow obstructions in our own bodies.

Johnson, I am not sure that the follow-up care that's needed will fall into the category of emergency, so I am not sure that it will be given. And by not giving it, it builds until it is an emergency.

[jimmylegs]

http://www.thisisms.com/ftopicp-4760.html#4760

Personal attacks, which can consist of slightly veiled innuendo or sarcastic comments aimed at the poster as opposed to the content of the post, are not tolerated at This is MS. We of course reserve the right to ban or suspend any member who violates this rule.

[patientx]

http://www.thisisms.com/ftopicp-4760.html#4760

Personal attacks, which can consist of slightly veiled innuendo or sarcastic comments aimed at the poster as opposed to the content of the post, are not tolerated at This is MS. We of course reserve the right to ban or suspend any member who violates this rule.

What I wrote wasn't a personal attack, it was a statement of fact.

[jimmylegs]

comments aimed at the poster as opposed to the content of the post, are not tolerated at This is MS

[Johnson]

....

Canadians probably want to question why their health service does not treat Canadians with medical issues caused by therapy outside Canada...

MarkW

They do treat such issues. I received exemplary care at the ER Triage. Others have also received careful attention. This is obviously not universal though.

I hope there will be a public inquiry into the St. Catharines case, and that such a tragedy does not happen again.

Edited to add:

Johnson, I am not sure that the follow-up care that's needed will fall into the category of emergency, so I am not sure that it will be given. And by not giving it, it builds until it is an emergency.

I don't know that it can be said that there is no follow-up to be had in Canada. I am sure that there are many GPs who will test their patients' INR and such, and/or order a Doppler if something is suspect. I'm not sure of what other follow-up is needed. I would hope that a decent GP would order ultrasound at intervals prescribed for any patient who has been treated with a stent, otherwise, one can pay privately for an ultrasound to check for blockages, clots, etc. It is the preponderance of neurologists who seem to be wary of the CCSVI paradigm, not every medico in Canada.. It is the procedure that is under embargo, not imaging, nor proper medical attention. I believe that Canadians can have proper follow-up if they have a supportive GP, and think things through, and have a plan before jumping on a plane for foreign treatment.

I thought that I might have a clotting problem, and I received care (including a call 4 days later asking me to come in for a follow-up exam). It was not an emergency, though it could have been. Does a Stanford stentee from Connecticut get follow-up in CT, or do they fly to CA and see the good Dr. Dake? If that stentee has an emergency, do they fly to CA, or go to their local emergency room? What about a Siskin patient from Idaho?

To reiterate; it is the procedure that is under embargo - not medical care for those who have had the procedure.