Wednesday, February 13, 2013

YOU GOTTA BE KIDDING ME!!!



I’m in shock that this has happened to me again, just five days before I’m scheduled to leave for India I have been informed that my procedure must be postponed for 45 days!!!  Yes that’s right I’m not going for treatment as planned, totally bummed!  The Indian government’s National Accreditation Board for Hospitals and Healthcare Providers has set policies and procedural guidelines for Indian hospitals treating international patients and Noble Hospital was not accredited to conduct specific treatments including the Combination Therapy protocol for Multiple Sclerosis.  The CCSVI Clinic’s new facility provider Inamdar Hospital was approved for the clinic’s protocol, but is not yet ready to receive patients.  What a huge hassle and disappointment, just like in 2010 when my “Liberation procedure” was cancelled shortly before I was scheduled to leave because the New York hospital unexpectedly shut down Dr. Sclafani from performing any CCSVI procedures.  I am assured that my rescheduled date will be at the top of the list and that I will not be responsible for any additional costs. 
The medical director of the Indian clinic made this statement in his letter to me, “We want you to have every chance at a successful treatment and removing the regulatory obstacles just goes with the territory in any healthcare setting, even in Canada or the US. As you know, even in India, there is opposition to our therapies by many powerful forces led by the drug companies. Navigating the roadblocks that they have put in our path over the last three years has not been easy and this is just another example.” 
Yeah this crap even happens in foreign countries even though the positive outcomes continue to be reported.   Of the 16 patients treated between March and November of 2012 under the clinics new protocol, overall patients improved by a total of 47% according to an aggregate of 3 scales used over an average period of 155 days post therapy.  Average EDSS scores dropped from 6.0 to 3.5 and there have been no adverse events reported since the beginning of the study period.  Therapy protocols have now been developed for several acute clinical diseases including rheumatoid arthritis, ALS, Parkinson’s disease and retinitis pigmentosa.  Over 50 cases of diagnosed diseases were treated over the same period at CCSVI Clinic but they can’t be included in the aggregate of statistics for MS.
Just as with opposition to the new treatments (Liberation Procedure) pioneered by Dr. Zamboni,  powerful forces have come together in opposition to autologous stem cell therapies.  There has been a vast over exaggeration of the hypothetical risks that have little to do with how therapy is actually practiced.  The media has been silent for the most part reporting on these issues other than contributing to campaigns of misinformation and disinformation which is a complete disservice to patients suffering from numerous neurological disorders.
The FDA in the US has recently flexed its regulatory muscle by regulating therapies involving a patients own stem cells and shutting down biotech companies engaged in therapeutic stem cell treatments based on a recent decision by the US District Court.  The FDA calls the process from extraction to reinfusion of autologous stem cells “manufacturing, holding for sale and distribution of an unapproved biological drug product”.  GIVE ME A BREAK, they are calling and regulating a persons own stem cells a drug!  The FDA recently shut down a stem cell clinic in Houston citing the company was illegally marketing an unlicensed drug and targeting similar companies engaged in researching and offering therapeutic regenerative therapies.
This can be viewed as the FDA working with major pharmaceutical companies to restrict and create regulatory barriers for US based stem cell therapies.  Now combine this with the FDA’s own admission to fast track drug approvals and admitting to “expedite the approval of many of these products by streamlining clinical trial requirements to permit smaller, shorter or fewer studies wherever possible”.  These actions not only help the major drug companies financially by easing the costs of clinical trials but also help them licence drugs that directly compete with interventional stem cell treatments.  This isn’t just going on in the US, Canada and Europe are similarly under the negative influence of the media and regulatory authorities being driven by commercial interests attempting to maintain the status quo to the benefit of major pharmaceutical companies.
This is a travesty that we are allowing to take place right under our noses.  The financial interests of a few mega billion dollar corporations take precedence over the medical well being of millions of patients suffering the devastating effects of chronic neurological diseases like MS, Alzheimer’s, Parkinson’s and ALS.  Many of us suffering from these conditions are forced to live without hope, as our conditions worsen we don’t have the time to wait for a new drug, we need alternatives now!  I can’t think of a more unethical situation that we are forced to live with.  This is why we need companies like the CCSVI Clinic and Regenetek to come up with and fight for alternative treatments that just might help people struggling like me.
All that being said, I hold onto my enthusiasm and hope for the therapy in India.  Everything still rests on my faith in God, I don’t understand why He allows hiccups like this to happen but I must rely on my belief that it’s all part of His master plan.  I received an email with the following encouragement (thanks mom): 
For I know the plans I have for you says the Lord.  They are plans for good and not disaster to give you a future and hope.  Jeremiah 29-11
This is the attitude I must live by and is the ultimate source of my HOPE!  Perhaps my trip was postponed by divine intervention, maybe to prevent something horrible from happening.  I don’t know but I do believe there is a reason for everything that happens and so I must not let this become a source of discouragement.
My last fundraiser did not turn out as well as I had hoped but I can’t expect a lot when everything was organized in just over a week!  I knew there was very little time to hold another event but I said what the heck…why not?  In the end we raised another $1,525 which I’m totally happy with; it’s more money than I had the day before!  This brings the total raised to $21,750 but I’m still over $8,000 short from my goal of $30,000 so perhaps this is a reason for the delay.  Now that I have to wait for another 45 days I will have the proper amount of time to plan another fundraiser.  There just wasn’t enough time for my last fundraiser to get the word out to have more people show up.  It was still a good evening and I must give a shout out to my buddy Markus from Big Rock for organizing the donation of a keg and to Brett and Spider, owners of the Blind Monk, they are awesome guys!  I’m not sure where or what my next event will be but I will start planning now and recruiting more help.  It’s very difficult to organize a fundraiser with very limited help given my energy levels and physical impediments so I must start the process now.  Stay tuned for more details…
There are plenty of other issues going on with my health and otherwise but I think I’ve rambled on long enough for this blog so I’ll save it for my next one.
God Bless,
LC

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