I could use some support…

Hiya Alice,
See my post I made at the “ALS FORUM”…
KEDASO
(Ken)

Hi all,
There has been some discussions here about stem cells transplants.
Here is a story about a San Francisco policewoman, and her fight with insurance companies to get her acceptance into an unfunded stem cell research at Northwestern covered by her insurance and an “experimental procedure”, of which two people who went through it were able to go into remission. Cost of the procedure is about $250,000.00.
I, too, had been in contact with them, and was told I would be accepted into the program. But when I heard it was unfunded, and I would have to cover the costs, I knew right off that insurance companies do not cover “experimental procedures”, and did not want to go through the aggrivation or frustration of fighting with the red tape.

But, this woman is looking for support from all who can…perhaps if any of you have free time, read the article by a reporter for the San Francisco newspaper, and some of the posts–especially her own posts, to the article.
[url]http://www.sfgate.com/cgi-bin/article/comments/view?f=/c/a/2009/04/08/BU3N16LKTS.DTL[/url]
and her own website:
[url]http://www.alicedicroce.com/Alicesblog/[/url]
She is fighting hard with them.
Thanks to all who reply there or in her website…
KEDASO
(Ken)

Was the Easter Bunny good to you?
…And I just emailed you back…
KEDASO
(Ken)

Hi Alice:

I read your blog and story, as well as some of your posts.. Sorry to hear about your rough time.. I was wondering if you have had any followup ncv/eng tests that might help document in fact your myelin sheeth/axons are actively being attacked.. This may help your case to get a different treatment like stemcell.. Unfortunately, I do not know enough about your situation to give you any medical advice, but it sounds like your doctors have not gotten to the problem yet either…. And on this Easter, I hope your thoughts and prayers are answered soon… Deano

Hi Alice,
Don’t give up the fight. I know it is frustrating and difficult but in the end it is also worth it. There are many on here that will continue to give advice and moral support and that is such a blessing for each of us. We all get discouraged at times but all you have to do is sign in and get a little boost. Take care and hope this all works out the way you hope for.

Hi Alice,
In your email to me, it had on the top to reply to:

To email alice, you can use this online form:
[url]http://www.gbs-cidp.org/forums/sendmessage.php?do=mailmember&u=16383[/url]

OR, by email:
mailto:ad0237@yahoo.com

I can’t remember which one I sent it to, but it was a long email.
Tag…YOU’RE it…
KEDASO
(Ken)

Alice, it looks like you lost the appeal ?

I have forwarded your blog site to everyone I know. Most people that know ME with CIDP dont understand it yet alone, probably wouldnt go to bat for me…but I have sent it out and I KNOW my sister and husband will help, too.

That picture you show of your hand…could be mine.

best of luck to you.
Stacey

Okay, I don’t look at your website all the time…
I looked today to update myself on what’s going on with you…
Now I’m confused–the last I saw your website, you were planning on switching from Blue ****..er, I mean Blue Shield, to another company,
I can’t remember their name, I think it was United Health or something.
Today, I read everything about stuff dealing with Blue Shield again.
Update me…
KEDASO
(Ken)

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?
NO MORE WIRE HANGERS…ALICE–GET THE AXE!
(Alice–that was great on your blog–LMAO)
KEDASO
(Ken)

Alice,
I am sorry for your disappointment. I am sure though that with your fighting spirit this will not stop you. It will only give you pause. Perhaps there is some good reason for this that is still unseen. Don’t lose hope and remember that you are more than this disease.
All my best,
Linda

Hi Alice! I have not been online much for a while due to illness in my family but that is doing better now! Just read what was going on and want to tell you that you are in my prayers and hope something works out! Wishing you the best and don’t give up! Hugs
Linda H