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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