This is what I was afraid was going to happen…

July 29, 2009 at 2:25 pm

Hi sweet Alice,
I’ve kinda been waiting to see you on the board again, with this very problem.
In a message I sent to you a long time ago, I mentioned this that it happened to me as well.
I had contacted the Stem Cell program at Northwestern a couple of years ago, and found out that it was NOT sponsored by the government, and that even though they told me I would be accepted into the program, as I met the protocols required, it would be on my back to pay for it, as even THEY told me most insurance companies would NOT COVER EXPERIMENTAL PROCEDURES. I indeed checked with my health insurance, and found they would NOT cover this, as they said it is written with most health insurance companies that they “do not cover experimental procedures”.
Great–so you have to be rich in order to get a last-ditch-effort to survive this awful disease, to pay the estimated $250,000.00 medical bill.
This is why so few people have gone through it, (I think only one person has actually gone through the stem cell transplant).

I asked you about this when you were trying to switch health insurance companies, and to get them to cover you early, that I asked you if you knew if you were going to DEFINITELY be accepted for coverage. And you told me that you thought you would have no problems.

This will be like banging your head against the wall, trying to get your insurance company to cover it, if they told you it is written in their policy,
“no coverage for experimental procedures”.

My neuro is head of Neurology at my local Medical Center, (Tri-City Medical Center), down here in Oceanside, (CA). He is watching the program at Northwestern. He told me that when he becomes convinced that the stem cell program definitely works for GBS/CIDP patients, he will introduce the program in alliance with Northwestern, at this Medical Center. Ah–put he is not pleased with the results yet. And because so few have entered the program due to the prohibitive costs, doesn’t help the situation.
He knows I have nothing left to resort to, and he is using chemotherapy, (Cytoxin), to slow the downhill progression of the CIDP.
I have been on the Cytoxin now, this past June marked 2 years being on it.
They have never had anyone on it this long–but they don’t have anything else they can do. Three doctors on my team of 7 have told me I am dieing.
I know that, and accept it, as my body deteriorates. I am now on oxygen 24/7, and my breathing is very shallow now. My Pulmonologist told me this is probably what I will die from–I will get a bad cold or flu, and not be able to recover from it due to being to weak to fight it off.
I know a tracheotomy/respirator is not too far off in my future now. All I can do is wait to see if my neuro will bring the program here. I think that if it goes to more than one Medical Center, then it must soon thereafter come off the “experimental procedure” list, and go onto as another protocol of treatment for GBS/CIDP.
I have made my advance directive out with the Medical Center. I do plan on going out fighting, expressing my wish to get the trach/respirator against a lot of doctors pessimistic views of living with it. But I was in contact with people over at our sister disease website, ALS, who told me you can live for years on the respirator.
But, I have also faced facts. My life-partner and I have talked at great lengths on this. I was lucky that when I turned 50, (I am 52 now), that AARP accepts you into their program for senior citizens. And they have a life insurance where it is a “no questions asked” policy. I jumped on that, and next month will mark the 2-year requirement to live, and now after August, I can die in peace knowing he will get the full benefit from the policy when I pass.

Sure, Alice, I will do whatever letters you want me to do, especially coming from someone else dieing of this disease.
But, I hate to say it, but I don’t have much hope of the letter-writing doing much to change the insurance companies’ ways.
UNLESS SOMETHING HAPPENS WITH WHAT IS GOING ON IN CONGRESS RIGHT NOW, WITH THE HEALTH PROGRAM. I think if we were Canadians, or Europeans, that their socialized medice WOULD cover the procedure. So, I don’t know the exact details of the health program currently being pushed through in Congress, but, perhaps this might be of some help.
And I also hold out a little bit of hope, that my neuro might bring the program here.
Keep me up on what happens.
All the best,