It's been exactly one year since I wrote about an exciting but controversial treatment for Multiple Sclerosis (MS), called the Liberation treatment.
A lot has happened in a year, and I think it's important to share some
of my thoughts with you. Please feel free to relay the information back
to anyone you know who has MS.
Let me begin with the tragedy that happened a month ago. CBC reports, Lack of follow-up deplored after MS death:
Some Canadians who've left the country for a controversial multiple sclerosis treatment remain frustrated by what they consider a lack of medical support after an Ontario man died following the procedure.
CBC News reported Thursday that Mahir Mostic, 35, of St. Catharines died on Oct. 19, one day after doctors in Costa Rica tried to dissolve a blood-clot complication following the vein-opening procedure.
He first went to the Central American country in June to have a mesh stent inserted to prop open a vein in his neck in hopes it would relieve symptoms of his fast-moving form of MS.
But after Mostic returned to Canada, his MS became worse and a blood clot formed around the stent.
Dr. Marcial Fallas of Clinica Biblica in San Jose, who cared for Mostic both times, thinks the powerful medication used to dissolve the clot triggered internal bleeding.
Fallas said he has performed the procedure 300 times, but Mostic's was the only time he used a stent. On Friday, Fallas said he wouldn't try a stent again unless it is proven to work specifically in neck veins.
Stents are approved for use in arteries, not veins.
When Mostic was in Costa Rica, Edmonton resident Betty Taylor was in Bulgaria getting a stent to open up her left jugular vein.
Taylor said she felt better after the procedure but that the effects didn't last and she's having trouble walking again.
Taylor said she was unable to get a referral to a Canadian specialist for the procedure and went abroad aware of the risks she faced.
"I was told that no, I would not get a referral because the doctor would be thrown in jail," Taylor said.
Like Mostic, Taylor's stent is now blocked. Over the weekend, she's going to the U.S. to have the vein opened again.
In offering her condolences to Mostic's friends and family, Health Minister Leona Aglukkaq noted seven Canadian trials are underway to determine whether blocked veins are linked to MS.
"How can a doctor know what they're looking for, or how to treat without that information or the scientific evidence that is required to move forward?" Aglukkaq asked reporters in Ottawa.
Mostic's death points to the need for clinical trials in Canada and a registry of people who've had the treatment, said Liberal MP Kirsty Duncan.
Last month, Saskatchewan Premier Brad Wall announced $5 million in funding for clinical trials in the province that aim to answer whether the procedure is safe and if it works.
While Wall did not endorse the surgery, nor did he dismiss the hopes of MS patients seeking it.
"We deserve to lead in finding them some answers either way on it," Wall said.
There's hope for the 75,000 Canadians suffering from multiple sclerosis. Outside of Canada, that is. I know it because I've experienced it. Or, rather, my wife, Tracy, has. She walked out of a medical clinic in Albany, New York, three weeks ago following a 40-minute procedure with a brighter outlook on the world and her future.
Her eyesight was sharper. The main symptoms of her MS -- the fatigue and vertigo which have forced her to sleep two hours every afternoon for the past nine years -- have all but disappeared. Yes, it cost us thousands of dollars to go cross-border shopping for health, but gaining back two hours every day? Priceless.
If you know anyone with MS, and Canada has one of the highest rates of the disease in the world, you've probably heard similar stories to ours.
People who are travelling the globe in search of the procedure that's unavailable here, often cobbling together money from friends, family and neighbours for the trek. To Poland. Mexico. Costa Rica. Bulgaria. Italy. Kuwait. Jordan. India. California. Or like us, to Albany.
Most have reported improvements. Some modest. Some remarkable. Patients formerly confined to wheelchairs are taking steps again. MS sufferers who couldn't previously walk long distances are now jogging. Warmth and sensitivity have returned to hands and feet. Energy levels have spiked.
One month after receiving the “liberation therapy” he had hoped would loosen the debilitating grip of multiple sclerosis on his life, Jamie McGowan was still racked with pain and felt like a ticking time bomb.
He feared one of four stents inserted into veins in his neck at a hospital in India could come loose and launch into his heart, or that an accidental blow might drive one of them into his brain.
“If anyone ever said ‘we'll need to do this again' . . . I would never do it, never,” says McGowan, who as a fan of body piercing could not be counted among the squeamish. “I would never go through that pain again.”
This may not sound promising but if you're part of that 1/3 who experienced marked or even marginal improvements, then the procedure is indeed worth the cost. This underscores the need to develop and conduct proper clinical trials in Canada and the United States. We need to understand more about this procedure and the link between CCSVI and MS.
Some people are frustrated with the slow process of getting clinical trials underway. Ashton Embry sent me a CTV link providing details on Mostic's death and the need for clinical trials (click here to watch all the videos and pay attention to what Dr. Zamboni says). Ashton also wanted me to relay the following to my readers:
It is clear that the MS Society wants to delay a pivotal CCSVI treatment trial for as long as possible as demonstrated by the Multiple Sclerosis Society/ Canadian Institutes for Health Research Report on CCSVI Treatment Research (http://www.direct-ms.org/magazines/Beaudet%20Executive%20Summary.pdf).
In contrast, Direct-MS sees the need for a CCSVI treatment trial as soon as possible. Such a trial will be necessary before the medical profession/government bodies accept that CCSVI treatment is of value for MS. The sooner the trial is completed, the sooner CCSVI treatment will be widely available in Canada and the USA.
Direct-MS is spearheading an effort to raise enough money to fund a proper clinical trial to test the effectiveness of CCSVI. Such a trial will likely cost ~ 5 million dollars. Because of the critical importance of such CCSVI clinical research, all non-directed donations to Direct-MS over the next 24 months will go to this project.
Importantly, Direct-MS is a volunteer, “flow through” charity and every dollar donated will go to research. We take nothing off the top and this approach contrasts sharply with that of the MS Society which uses the majority of all money collected for internal uses (salaries, fund raising, administration, travel) rather than research.
If you wish to donate to Direct-MS, this can be done either through our website (http://www.direct-ms.org/donate.html) or by sending a cheque to Direct-MS, 5119 Brockington Rd NW, Calgary, AB, Canada, T2L 1R7.
Direct-MS is a registered charity and a receipt for tax purposes will be issued promptly for both Canada and the USA. Please tell your friends and relatives, if they want to help persons with MS, to consider donating to Direct-MS. If we are going to reach our goal of funding a proper CCSVI treatment trial, we are going to have strong support from as many people as possible.
I do not share Ashton's cynicism on the neurological community, but I do share his passion for more answers regarding MS and the need for proper trials regarding the liberation therapy. Ashton's insights on diet and MS have been a valuable source of information for many MS patients and I am thankful to have met him and his wonderful family.
I invite everyone to carefully assess the decision to undergo this procedure. Even if you see marked improvements, you should be aware that there is a risk of restenosis of the veins, and performing angioplasty several times on blocked veins can lead to permanent damage. Of course, if you have no other option, and are frustrated with neurologists and the delays with clinical trials, then you might want to consider undergoing this procedure elsewhere. Again, it's not a cure, but we definitely need more research and proper clinical trials to understand why some patients see benefits and others don't.
In the meantime, people should go over the one-year timeline provided on CTV's website. I would also urge patients, especially newly diagnosed patients, not to lose hope. Don't do what I did, spending months at the McGill University medical school library researching MS after I got diagnosed, trying to find out everything I could about this bedevilling disease with no simple answers.
As with any illness, your mindset is critical. You're going to have great days and you're going to have bad days. Just accept it. Stay positive, take care of your body and your mind, and focus on your life. Focus on what you can do today, not what you might not be able to do tomorrow. Remember the natural course of the disease is that many patients live a relatively normal life.
As for me, I'm still taking high dose vitamin D (drop form, 20,000 IUs a day) and feel very good (talk to your doctor before doing anything). I'm not perfect, but I'm thankful for being able to work and be a productive citizen (if I can only spend less time blogging!). I'm considering the liberation treatment, but I would prefer doing it under the supervision of Canadian or US doctors. That's my preference and it's based entirely on receiving proper follow-up care.
But I will also tell you that I remain hopeful. There are a lot of clinical trials going on in MS, and I wouldn't be shocked to see more breakthroughs in the future. Just this weekend, I read about research from the University of Colorado at Boulder suggesting that an existing anti-inflammatory drug can be used to heal multiples sclerosis lesions. There will be more exciting research on MS, but we need to remain patient and we need to explore all possible treatments, no matter how controversial they are.