I’m Not Getting Your Emails…

April 17, 2009 at 3:09 pm

Heya Alice,
Look–I don’t know how this works, but I emailed you a long email, and gave you my direct email address…did you get it?
And since I get tons of junk krapmail, I just ignore it…perhaps I could have missed it…is it under “Alice de Croce”, or sex kitten, or what?
Anyways, I’ve been thinking about this for a couple of days, and the more I think about it, the more annoyed I get. Not at the insurance companies, as that’s just beating a dead horse or banging your head against the wall…THEY are just a bunch of money-hoarding ‘holes, that you’re not gonna get anywhere with them.
What I am REALLY annoyed with, is with the research program itself. I did a thread on them about a year ago or so. First-they are dealing with stem cell research, of which they should have government funding or backing…WHY DON’T THEY HAVE THAT??? They are not stupid, (at least I hope not), and that in real life, they should know that insurance companies don’t or won’t cover “experimental procedures”. Are they purposely only aiming for wealthy people who can afford $250,000.00 out of their pocket? Perhaps it’s time those doctors bought a new house, or new car, so they took this “research” on looking for people so desparate, that they will join the program to save their lives?
Alice, I think you’re next step would be to aim your ire at the program itself. Get some media about it going…WHY is there not funding? WHY are you leaving poor people out of the program? WHY, with all the stem cell research going on now, that there is not government backing–and if there is, WHY do they expect the patient to pay the TWO HUNDRED AND FIFTY THOUSAND DOLLAR BILL???
I told you I had applied a year ago, and was told I would probably be accepted into the program, because one of the criteria was that you had to fail in at least two of the normal protocols for normal treatment of CIDP, (which I have). But when they told me they were unfunded..I didn’t even want to go through the fight with the insurance company, since they usually do not cover “experimental procedures”. It took me 14 months of cutting through red tape and insurance companies back and forth, JUST to get my electric wheelchair…what aggravation THAT was. I did not want to go through it with the stem cell program–I don’t think I’m strong enough to do it again.
But–maybe you can embarass them with the “WHY’S” I mention above? It is NOT RIGHT! And we don’t have national funding like MS or MD or even ALS, as our disease is a rare one–I guess it takes someone famous to make a rare disease known, or have a famous person back it…like “Lou Gehrig’s Disease”, or Jerry Lewis and MD…
Maybe even have a letter writing campaign to two places–one, being the hospital/research program, and two, perhaps even the new Health Commissioner under Obama now, how the program discriminates against people who are not wealthy enough to afford the $250,000.00 !!!

I hate to see you crushed like this–you have been putting up a great fight. But, maybe these two ideas might be something to go after. Could that reporter who did the good article on you, perhaps be willing to help you in this fight/embarrassment of them?
(Alice–that was great on your blog–LMAO)