IBD-A MOM's guide to survival
Well, it seems that the FMT controversy plot thickens. As some of you may know, we had to travel to the US for Maddy's FMT procedure since it was not approved for use in Canada. The regulations around FMT were much less restrictive in the US, Australia and the UK. Now, this appears to no longer be the case in the US.
Since the FDA caught wind (pardon my pun) of the widespread use of FMT, the sh*t has hit the fan.
As the Scientific American writes: "The Food and Drug Administration has caught a whiff of the controversial new treatment and has declared fecal transplants as a biologic therapy, meaning any doctor who wants to use it will have to file an investigational new drug application. For patients, this means more paperwork, a longer wait for treatment and a potential application rejection from the FDA."
Since leaving Portland less than 2 weeks ago, Maddy's doctor, Dr. Mark Davis was forced to cancel scheduled FMT treatments in light of this development.  He is one of many doctors who have no choice but to deny patients this procedure until they receive approval from the FDA.  And even if they receive this approval, it's unknown how long this will take and if they will require approval on a case by case basis.
After witnessing first hand what this groundbreaking treatment can accomplish, I am very saddened by this news. It pains me to know that many people (especially kids) will not have access to this treatment. Time will tell how much this will affect doctor's in the US being able to administer the treatment and how the "trickle down effect" will affect us Canadians, but I refuse to dwell in the negative.  
This is a very safe and effective treatment that has the power to change lives.  I will do the best I can to share, educate and lobby to help create accessibility to FMT in Canada.  This needs to be an accessible treatment for everyone.  The FDA can shut down ND's and MD's but they can't stop us regular people who want to see our loved ones have access to this healing treatment.  I am actively seeking information about the ethics and legality of ND's in Canada treating C Diff and IBD patients with FMT, if anyone has concrete answers, please contact me.  I am currently waiting to hear back from the British Columbia Naturopathic Association and The Canadian Association of Naturopathic Doctors.  It will be interesting at the very least to know where they stand...and no, I haven't even bothered with our government funded medical system, I already know where they stand on this.  My FMT research prior to traveling to the US for FMT told me all I need to know about the possibility of finding an MD or specialist of any kind willing to do this procedure outside of clinical trials.  I only hope that if we all try to do our part to make it known that we are willing to take this into our own hands, (and bathrooms) that our government will see how important it is to provide professional care, if not to keep people safe but also to document the efficacy of FMT and further perfect the treatment.  I will continue to update the blog as I become aware of new developments.
In the time being though, I'm willing to be a voice for this disease and for this treatment.  Neither Maddy or I are ashamed nor concerned about privacy around this subject.  As a result, our family feels a great responsibility to try to help as much as we can.  We will do our best to provide information, fight for approval and regulation of this treatment and support others who embark on this journey...it's the least we can do.


06/19/2013 4:50am

since your in Canada, have you tried Mutaflor probiotic for your daughter?
It is an ecoli bacteria available most places- Canada, Australia, Germany but not Usa thanks to Fda.
I was planning to purchase some but found out I cant in the USA. so i cant say if it helps, but it makes sense.


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