Will I be able to get in? If I get the right address to send everything!
My legs are getting harder to move right now along with my left arm! Kind of scary! I need the SCT as with everyone else, just hope they accept us all!
Paula, they will accept you! And I pray indeed accept all of us! Have faith! We will beat the beast together.
I know there is significant risk but I believe it is worth it for those of us whose lives are badly impacted.
And if I really get better, you can bet I will never ever ever get another flu shot in my life again, because that was what gave me CIDP.
I do hope you are all accepted and that it halts your disease. It took 10 years of my life and I will not give it any more. I can’t blame a flu shot because I’ve never had one but I do think stress had something to do with it. Heather, your story closely mirrors mine except I never had it affect my ability to breath. I went for years being pretty stable then BAM! Not only does the trial help each one of us, each person who goes through brings it closer to a mainstream treatment. Being in a wheelchair and unable to do basic things for myself in 2011 made it worth the risk. Never knowing if the next relapse was going to leave me permanently in a wheelchair was not the way I wanted to live life. I will be praying hard for each one of you. Keep me posted.
Before I got diagnosed and didn't know what was gong on, I looked into a place that did your own stem cells or plasma but they didn't take my insurance. A lady with my car insurance had told me about them and said it really helped her with her shoulder and since I also had neck problems I thought I'd give it a chance. I don't think it was that much but I think it was around 3k an injection. It had more to do though with helping your discs and joint heal instead of having surgery like I did on my neck for a herniated disc. It would be nice if some of these doctors though would help out people that were not wealthy.
I have also heard that in some states doctors only like to take medicare while in others like mine they want you to have insurance and thats why I picked up a medicare supplemental insurance.
What is the long term side effects caused by the SCT does anyone know? Is your risk of certain cancers increased after having the SCT because of all the drugs you get (chemo) to bring your white count to zero? I was thinking about looking into the SCT. Actually I sent in my paperwork about a year ago and got a call back but I got cold feet because I was worried about long term side effects that would be worse than my current condition. I currently get IVIG every 21 days. It keeps me pretty good except for some mild pains and burnings. But I have been declining very slowly with more aches and symptoms lately. But again, my neurologist at the U of MN said that the SCT has a lot of long term issues and he would not recommend it unless I got considerably worse. Does anyone know with the issues would be? I want to get the SCT and be done with this disease so much.
Hmm...I'd be very interested to hear long term side effects as well as I am considering SCT too. I was diagnosed 2 years ago, tried ivig's weekly for 4 months, and then we had to go to Plasmapharesis every 10 days since...and I'm only 37 and the quality of life I have is poor and am hoping SCT will be the answer. I contacted Northwestern a month ago, and am trying to get all of my records together...so if anyone out there knows of any negativity related to SCT, I'd like to know as well.
chirpybirdy said:
What is the long term side effects caused by the SCT does anyone know? Is your risk of certain cancers increased after having the SCT because of all the drugs you get (chemo) to bring your white count to zero? I was thinking about looking into the SCT. Actually I sent in my paperwork about a year ago and got a call back but I got cold feet because I was worried about long term side effects that would be worse than my current condition. I currently get IVIG every 21 days. It keeps me pretty good except for some mild pains and burnings. But I have been declining very slowly with more aches and symptoms lately. But again, my neurologist at the U of MN said that the SCT has a lot of long term issues and he would not recommend it unless I got considerably worse. Does anyone know with the issues would be? I want to get the SCT and be done with this disease so much.
Chirpybirdy, did you get accepted last year to the program? What long term effects did your doc say there were? I would like to know too.
One thing I know is chemo can cause neuropathy too, in addition to a slew of other things. I don’t want to get neuropathy when trying to get rid of one.
And there is no data about long term efficacy. We don’t know if the remission can last more than a few years.
I have a lot of worries. But still I am interested.
I applied and was accepted into stem cell. Here's what I recall of the top of my head. First, you send in the application and meet with Dr. Burt. If you meet the criteria your diagnosis has to be confirmed by them. Then they file with your insurance company. The costs for me are well over 100 thousand dollars. They sent in many appeals on my behalf. My insurance is a ppo bcbs of IL and they would not pay for it. I was also worried about the expenses I would be personally responsible if there were complications because it would be an elective procedure. That also weighed into my decision. It is still worth trying to get insurance to pay, even if they haven't in the past. Each time they do a transplant it adds to the success rate which in turn may and has changed their policies. Some insurances do pay. Even BCBS will pay if it is self funded. I would set aside costs and walk through the process if you can. There are people who have gotten donations to pay for it. You can always choose not to go through with it. And even if it doesn't work out you know that you have done everything to be well. Which is what I did. It is still on the table if I need to do it as a last resort, but I have been doing pretty well. I looked into how the first person who did stem cell for cidp is doing. I think it's over 10 years ago. I read that she's doing great with no side effects to speak of. If you read her story she had no options left. Treatments were not effective for her. There's a lot of information and testimonials on the internet if you google it. And there's a facebook page as well. I think someone already posted it. There are risks for sure but there is also risks with the drugs we take to control cidp and with the cidp itself. For me it is a quality of life issue. If insurance would have paid, I would not have thought twice. I am hoping in time my insurance company will see the benefit of stem cell and pay for it. I may get a new carrier who does. Again, I now have another option just in case, which is comforting.
I finally got all my records in and sending it out Monday. I will be starting retuxan next week in the mean time. I have heard my insurance won’t pay for it, but that’s just hear say and I’m worried about the personal cost to me since I’m on disability.
My neuro also said not to do it because they have not published any studies and she’s currently treating a patient that it only lasted a few months and now is worse.
I’ve only have had this disease for over a year, and I have lost the ability to work already. This disease has hit me the first time very hard and that’s all it took.
I just had IVIG on Monday and still have burning and numbness every where. I see everyone else walking out no problem afterward and I seem to have a hard time the day of and afterwards.
I’m just really not happy in general
Paula, is that patient your neuro mentioed who is now worse one of Dr Burt’s patients? Do you know where s/he got it done?
I am also very new. I can’t even have a diagnosis because of borderline tests. No treatment and miserable.
As you know doctors cannot mention patients names, she did say it was done in Chicago, I am new but was diagnosed back in November of 2012, I will just have to remain proactive in my treatment and continue asking for treatments before I can get to Chicago.
Thank you Paula. I appreciate your doc mentioning it. I think it is important to have a realistic whole picture. It is not a guarantee and it could make it even worse, which is scary.
It is a big decision given all the risks. Unfortunately the method is so new there is simply no long term data yet. We have some short term anecdote stories from those who have it done and are kind enough to share. But naturally we don’t hear as much from those who are not doing well.
Friends, I would invite you to join Hematopioetic Stem Cell Transplant - MS &Autoimmune Diseases FB page. It is moderated by George Goss(a post HSCT and MS patient). Most on the site are MS patients but has some CIDP transplant patients on the page also. It has a wealth of information from scientific data about Stem Cell to lodging and such at facilities all over the world. Chicago,Israel, and Moscow are all doin HSCT for CIDP. HSCT is NOT without risk but is the best treatment for halting this disease at this moment. The greatest risk is infection during times of low immunity and Chicago is great for being pro active in this area. All treatments outside of HSCT are only immunomodulating and do not treat the underlying disease. HSCT is not new, it has been around a long time but has just recently been used for autoimmune disease. Dr Burt actually worked with Dr. Slavin At the Israel facility to create the Non-myloablative chemo used for CIDP patients. This chemo protocol does not have neuropathy side effects but others chemo regimens can. (ie cancer). Everyone has their own timeframe to decide if it is treatment for them. I hope with the new healthcare mandate that more insurance companies will cover it. Mine was a self funded BcBS and it was covered. There is an insurance list of companies that have covered in the FILES section on theFB page listed above. Hope this clears up some questions. It took me 6 months to apply because like you I had concerns. Paula, I hope the Rituxan goes well and helps. Mary
There is also a FB page called Dr. K. Burt Stem Cell Study(HSCT)Chicago. Many post CIDP patients are on there too. Happy exploring!
Wanted to add that most Neuro’s do not recommend SCT at first. Mine didn’t until she read the protocol and saw my results. Now she recommends other patients to do HSCT.
Could not find the list of insurances that covers the procedure.
Insurance Providers Coverage
Please note the following companies have provided Hematopoietic Stem Cell Transplantation for Autoimmune Diseases coverage for services provided at Northwestern Memorial Hospital by Dr. Richard Burt:
Patient #1 - Humana Approved March 24, 2008
Patient #2 – Priority Health Approved August 28, 2008
Patient #3 – Blue Cross & Blue Shield of Illinois Approved October 13, 2009
Patent #4 – Blue Cross & Blue Shield of Illinois Approved September 25, 2008
Patient #5 – Blue Cross & Blue Shield of Kansas City Approved August 13, 2008
Patient #6 – State of Arizona Approved January 9, 2008
Patient #7 – State of California Approved March 13, 2008
Patient #8 – Blue Cross & Blue Shield of North Carolina Approved September 17, 2008
Patient #9 – Aetna Approved September 9, 2010
Patient #10 – Blue Cross & Blue Shield of Kansas Approved November 15, 2010
Patient #11 – Medicaid of Illinois Approved April 28, 2009
Patient #12 – Blue Cross & Blue Shield of Kansas Approved March 25, 2009
Patient #13 – Aetna Approved October 14, 2008
Patient #14 – Blue Shield of Northeastern New York Approved September 21, 2007
Patient # 15 – Blue Cross Blue Shield of Illinois Approved April 15, 2009
Patient #16 – MAXIMUS (thru State of California) overturned Health Net Life Insurance Company Denial on November 21, 2010
Patient #17 – Managed Medical Review Organization (MMRO) IRO overturned BC_BS MN denials on November 10, 2011
Patient #18 – Blue Cross Blue Shield California approved August 2010
Patient #19 – United Healthcare Choice Plus-HRA approved March 2012
Patient #20 – ODS/Moda Health approved 2010
Patient #21 – MediCARE Plus Blue approved February/March 2011
Patient #22 - Federal Blue Cross/Blue Shield approved May 2011
Patient # 23 - Aetna approved February 2012
Patient # 24 - CA Anthem Blue Cross - PPO approved July 2013
Patient # 24 - Anthem Blue Cross approved August 2, 2013
Patient # 25 – Anthem Blue Cross Blue Shield of Maryland approved November 2012
Patient # 26 – State of Illinois approved April 8, 2013
Patient # 27 – State of Illinois approved August 16, 2013
Patient # 28 – State of Illinois approved September 4, 2013
Patient # 29 - BCBS Federal Program approved November 6, 2012
Patient # 29 - BCBS Federal Program approved August 1, 2013
Patient # 30 - Care First BCBS approved June 21, 2013
Patient #31 - Humana Military approved June, 17, 2013
Patient #32 - BCBS Regence approved August 28, 2012
Patient #33 - BCBS Regence approved May 29. 2013
Patient #34 - Anthem BCBS approved May 22, 2013
Patient #35 - Health Alliance approved December 7, 2012
Patient #36 - Health Alliance approved April 10, 2013
Patient #37 - BCBS of Illinois approved March 14, 2011
Patient #38 - BCBS of Illinois approved October 17, 2011
Patient #39 - BCBS of Illinois approved February 12, 2013
Patient #40 – Blue Cross & Blue Shield of North Carolina Approved November 15, 2012
Patient #41 – Optum Health approved October 24, 2012
Patient # 42 - Wellmark of South Dakota approved on September 17, 2012
Patient # 43 - Wellmark of South Dakota approved on October 15, 2012
Patient # 44 – Aetna approved on September 18, 2012
Patient # 45 - United Healthcare approved on February 24, 2012
Patient # 46 – Cigna approved on February 2, 2012
Patient # 47 - State of Texas overturned BCBS of Texas denial on February 13, 2013
Patient # 48 – PHCS United Health Group denial was overturned by independent review (not sure by who) on February 14, 2013
Patient # 49 – Denial by insurance (not sure which one) was overturned on June 6, 2012 (not sure by who)
Patient # 50 - BCBS of GA approved February 2010
Patient # 51 - Blue Cross Blue Shield Federal Employee Plan approved October 31, 2013
Patient # 52 - BCBS of Oregon approved November 2013
Patient # 53 – Aetna approved December 2013
Patient # 54 – Blue Cross & Blue Shield of Kansas City approved December 20, 2013
Patient # 55 – Medicare/Medical Mutual of Ohio approved February 2013
It was on Dr. Burt page. I didn’t check the other but should be there too. It is patient provided and not by companies so it’s not a guarantee of benefits. I am patient #25.
Thanks Mary. I feel bad that I was denied with bcbs Il and want to know how all these others got approved. I wonder if they are all self funded. If they aren't something isn't right.
Mabes, not sure about that. I know some had to appeal and at least one had to go to through a state review board. The best thing is to find out how your insurance appeal process works. Some have a time and number limit. I had a case worker tell me you can sometimes request an in person review along with appeal. Lot harder to say no in person. If you join those FB pages, I’m sure someone would help you with appeal info. On one or both pages in FILES section is a sample appeal letter that was actually written by a member and sent to hs insurance. Hope that helps. PS I agree it’s not right that some approve while others deny. Bottom line you have show them that it s financially better for them to approve. Cost of years of IVIG VS. HSCT.
I did go through all the appeals properly. I was on ivig every week for a long time and months of hospitalizations the first year alone at great expense to insurance and my family. I don't want to discourage anyone from applying. I strongly believe in this program and would have already gone through it myself. Insurance is a big part of the process because it pays for it. I hope the health care reform will help us have the freedom to choose treatment options instead of them choosing for us. Mary,thanks again.