To Alice–please Read-this Is Important To Me

    • Anonymous
      November 14, 2009 at 6:02 pm

      Hi Alice,
      It seems you missed my post to you, under,
      “Neupogen pain and discharge”.
      It would be important to me, if you found out WHEN Dr. Burt
      will be releasing his research results to the Neurological Society.
      Both pros and cons, need to be discussed, so that it might
      possibly grt bryond the “research stage”, and possibly become
      a normal protocol of treatment.
      I am at the end of my rope. I just had a bad call from my PCP,
      when I pushed him for about how long left might I have to live.
      He told me if my blood work continues to get worse, I might
      only have 7 months left. That took me by surprise. And my
      normal appointment with my neuro wasn’t much better, as he
      told me there’s not anything else he can try–though he has been
      watching the stem cell program, DR. BURT IS NOT REPORTING
      ON HIS RESEARCH. This needs to be done, to get past this
      damn “experimental stage”, so that the insurance companies
      have to pay for coverage.
      Is there any way you can find out when he will be releasing his
      research done, to the neuro society? Anyway of pushing him to
      do it soon?

      I am so glad this has worked for you…now, if only I can try it
      for myself–I have nothing left to try.

      Please, if you can get anything out of him…Thanks

    • Anonymous
      November 15, 2009 at 5:06 pm

      Hi Ken,
      This is Sophie – (Alice is resting after our walk – stopping steroids is leaving her more tired than usual.)
      We had mentioned you of course but they told us that they are directly in contact with you and are intransigent with patient confidentiality – just said that they were in touch with you.
      So you probably know as much as we do in terms of protocol procedure and FDA approval process.
      They will be closing this trial in March 2010, and will be doing a “primary data collection” then. The study will be officially closed in March 2011. But until they have a minimum of data, how can they get approval ? – I feel you know as much of this as we do.
      Now one thing that we did learn from a fellow is that they will do everything possible to keep making this treatment available even outside of the official clinical trial.
      Please keep in mind Ken that Dr. Burt is very busy and we never “hung out” to discuss this – the time he spent with us was concentrated time – he is perceived by hospital staff as being extremely efficient and brilliant, and i have no doubt that he will do everything in his power to make the FDA approval procedure go as quickly as possible. He is a visionary man, truly believes in this treatment, and seems to be doing everything in his power to make this accessible not only in the States, but around the world.

      I’m sorry I can’t help you more with this Ken – I can tell you that I’ve found his team to be extremely helpful, not only with Alice but with my other patients we’ve talked to.

      I’m so sorry for the call you got from your PCP – in light of this, is there no possibility of a compassion protocol ? I would call Burt’s team to find out, but I’m sure they would want to talk to you directly.

      My heart is with you Ken,

    • Anonymous
      November 15, 2009 at 11:31 pm

      I know your mind now is concentrating on getting Alice better.

      I do not wish to intrude on your personal care of a great girl,
      such as Alice. And my utmost wish is that she no longer will
      have to know what CIDP is–ever–and that it is totally gone
      from her body.

      But sweet Alice was very lucky, by having some VERY caring
      parents, that paid the $100,000.00 cashier’s check to
      Northwestern, before they would do anything on Alice.

      No, Northwestern is NOT in contact with me.
      For them to say it is patient confidentiality is a bit of bs.
      Once I said to them there was no way possible for me to
      come up with the $100,000.00, END OF CONVERSATION…
      I am supposed to live on a government check of $634.00 per month.
      That sure won’t get me far with Northwestern.

      Since this is “research”, there were 11 lucky and/or wealthy people
      that were able to go through this program. After reading the MANY
      posts by people here in this forum, how many here would be able
      to afford this out of their pocket, since insurance will not
      cover “experimental procedures”, as you found out with Alice.

      Dr. Burt has to find SOME time to write up his research.
      If other doctors see how well it has done, then it will catch on.
      Yes, I know of the 2 that it didn’t work on, with the excuse that
      those two people had advanced CIDP.

      But it is like we, here at the forum, are the onlu ones knowing about
      this procedure. All neuros can do right now, is google the program,
      and see that it is ongoing….no written documents on this.

      So, you see why I tried to get you two to ask him for research
      results…and soon.

      I am sorry if I am sounding pushy…but my clock is ticking.
      I wish I was in Alice’s place.

      All my best for a good and quick recovery for Alice,

    • Anonymous
      November 16, 2009 at 8:54 am

      Hey Ken –

      I am a member of a Facebook group for CIDP. There was a post by a girl that said her insurance company DID pay for her treatment at Northwestern…the same one Alice just went through.

      Have you at least attempted getting your insurance to pay for it? It might be worth the try.


    • Anonymous
      November 16, 2009 at 9:19 am

      Correction…I just went back to the Facebook page & the girl says her insurance paid for a large portion of it.