Yesterday, I called to inquire about the upcoming clinical trial at
Hackensack. The person on the phone was polite enough, but didn't even know
what the basic criteria was for becoming a participant. (If the folks who are
working on this trial are reading this, and I strongly suspect that you are,
maybe you can consider providing those people with a little more information).
He gave me another number for the coordinator at the medical center. I spoke
with the coordinator who provided the info I needed. Elise met every single
criteria - except for one - age. The study was being limited to participants
between the age of 18 and 80. And very matter-of - factly, that door was
closed. I was devastated. I understand control factors and business
decisions, but how could they do that to us? Who else could I speak to? I
was given the name of a person at the company where the shark cartilage was
produced.
Phone call #3 - well, after "donning my battle garb" (you folks on mol, who
know me by now wouldn't have expected me to do anything less, would you?),
Sure I can take on these folks…I felt prepared to speak to this company.
Never was I more unprepared for the response that I got. When I explained to
the person on the other end of the phone who I was and why I was calling, for
a moment their was dead silence. His first words were "give me a minute, I
know we can figure this out". I barraged him with questions - who sets the
criteria? Why aren't they accepting kids? Who can I speak to at Hackensack?
What's the political impact and process? Where do I go in the FDA….and on and
on and on. He answered every question patiently and honestly. (Why wasn't he
arguing with me, he's supposed to be the bad guy?) Then he went on to explain,
how maybe we could get the folks at Hackensack to make an exception (they had
already made one other). But as he pointed out, maybe we didn't have time to
take on all these battles (he used the word "we", was he implying that he was
going to help? I think I'm confused.) After giving him the specifics on
Elise, he was quiet for a moment and then asked if this had been discussed
with the pediatric oncologist. I replied not this in particular, but the fact
we are looking for any and all options is no secret. He strongly recommended
the ped onc, become involved. They don't have to condone it, but he would like
them aware if this is a treatment option that Mom & Dad want. He then went on
to explain how they think shark cartilage works and why. (This isn't going at
all like I expected. It almost sounds like truly cares. He tells me he has
kids. We have to figure out a way to get that stuff into Elise, she's only
now starting to swallow again. In detail he makes some suggestions…) He wants
to know how much Elise weighs, so he can figure out the recommended dosage
according to the FDA guidelines for the trial and what the costs would be.
(Okay, here it comes, now we'll do battle) Dosage is according to weight -
And so now he ever so casually slips in that really wants Elise to have the
stuff. He'll try to get part of the supply donated. (Did I understand right?
That's not what these alternative therapy companies are supposed to say, at
this point we should begin discussing, visa, mastercard and extended payment
plans) Oh, and the full cost would be about $83.00 for a 24-28 day supply and
the protocol calls for a 20 week regimen. But he says again he'll figure
something out and thinks the company can pick up some of the cost. The dead
silence is now on my end, and he asks if I'm there. All I can manage to
mumble out is something to the effect that this was not the way I though the
conversation would go.
Just a couple of points about this whole thing if you're still interested.
Get as much info as you can. If you can't do it yourself, find someone who
will. Make the calls and don't hesitate to go right to the top. Now maybe I
am being naive here, and maybe this is all too good to be true, and maybe I
just don't know about the rest of the deal, but at least for today, I think we
may have another option here. And that's something we didn't have yesterday.
Final point, you do need to be very careful, 'cuz there are probably lots of
companies out there, who don't do business like this. I think I was very
lucky. The guy I spoke to was patient, gentle and kind. I think he really
cared. What a novel concept in business.
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