URGENT request for information
Posted 20 January 2009 - 04:15 AM
I was diagnosed 01/04/07 with Systemic Sclerosis, Diffuse Scleroderma - what is the generally accepted name?
Included with the sclero, there is the hearburn (GERD), interstitial lung disease (ILD), congestive heart failure (CHF), severe skin involvement and a host of other ailments yet to be named.
I need your input and advice, it will be a teleconference so using my physical appearance to help me argue my point is out.
If you can offer me any advice no matter how small or insignificant you may think it is, I may not have thought of it. My pain meds I try to keep at a minimum, but my brain is still handicapped by fog and pain. Thinking straight is a real challenge.
Thank you all so very much!!!
Posted 20 January 2009 - 09:28 AM
While you're waiting to hear from the others, you can search the forum for past discussions about stem cell transplants, at Search Sclero Forums.
The official name for it is "diffuse systemic sclerosis". It it usually referred to as "diffuse scleroderma." The medical abbreviation for it is "dSSc".
Diffuse Systemic Scleroderma is also variously known as Scleroderma (SD), Diffuse Sclerosis, Diffuse Cutaneous Scleroderma, Systemic Sclerosis (SSc), Progressive Systemic Sclerosis (PSS). It also includes Scleroderma sine Scleroderma (Scleroderma without Scleroderma), and the subset of Familial Progressive Systemic Sclerosis (FPSS).
Good luck with your appeal -- we'll be rooting for you!
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 20 January 2009 - 11:42 AM
I can't help with your questions by I want to wish you great luck and success with your appeal! I really hope it goes smoothly and without any complications for you!
Posted 21 January 2009 - 05:10 AM
Posted 21 January 2009 - 08:04 AM
Many thanks again and any advice is welcomed.
Posted 21 January 2009 - 11:51 AM
As far as I know, the following insurance companies cover stem cell transplant.
3-BCBS of Florida (only one case - won on appeal by Northwestern)
None of the BCBS New England companies cover stem cell ie BCBS of Connecticut, New York, etc..
Some individuals have been lucky enough that their company wrote a separate policy to cover the stem cell, however that does nothing for the appeal process as it does not set a precedence of prior insurance coverage. Basically, if the insurance company covered the procedurer in the past -- then they need to cover it now for you.
If you are denied on appeal, you should contact your state's attorney general's office to see if the state's health insurance laws can "force" coverage. For example, in CT, I was denied and contacted my state's attorney general office where I was informed that since my company used BCBS as an administrator for a self funded plan, that the state could not force coverage for the SCT as self funded plans run "outside" of CT insurance laws. Had the plan been a "fully funded" plan, the attorney general's office could have forced BCBS of CT to cover the SCT.
Unfortunately, most plans are written to "exclude experimental treatments" regardless or not as to if they are a "medical necessity". This is the problem -- the exclusion is not written to say "exclude experimental treatments EXCEPT when deemed a medical necessity". I have tried to get HR depts to change this wording with NO success as with this wording you would be able to get the SCT coverage.
As far as the appeal, and your doctor will know this -- the insurance company should be using a licensed rheumatologist preferably one that specializes in sclero or autoimmune diseases. It is important that their "expert" is truly and expert and knowledgeable about the sclero condition.
As a side note, Northwestern handled my appeals. They did an excellent job, however, in the end I was denied with the only option of paying for it out-of-pocket. The problem with this is that should you have complications, the procedure can cost much more than you anticipated -- and your insurance company will cover none of it -- and try to relate any future coverage for any ache or pain back to the SCT so effectively, you will not have insurance coverage without a battle for each expense.
Good luck. Gidget.
Posted 21 January 2009 - 01:01 PM
My health carrier was United Healthcare and they paid for my transplant through the SCOT study. If I can offer any help in your appeal please let me know. Maybe a letter from someone that the treatment has helped will be of assistance? The argument is the health carrier will save money in the long run by paying for the treatment now. The best way to show that is by the testimony of people who have been helped by the treatment. If it is permissible, I would be happy to send a letter on your behalf or the decision makers would be welcome to call me. While I am sure you have already done this, letters from your doctors are of assistance as well. Let me know if I can be of assistance.
Posted 21 January 2009 - 01:06 PM
I just read Gidget's note and what she says is true regarding "complications." If I recall correctly, I believe I was told the transplant would cost approximately 200k. I had complication after complication (though it was still worth it to me in the end) and the total bill ended up being closer to the 600-700K range. However, I was very lucky and my insurance company paid the bill. Unfortunately, I don't think my case is the norm, though it should be. Good luck and once again if I can help, don't hesitate to let me know.
Posted 21 January 2009 - 04:24 PM
Hope you win your appeal for stem cell. Don't know anything about the process so I am no help at all. Will keep you in my thoughts though and hope you are able to get the medical attention you need.
With gentle thoughts,
Posted 21 January 2009 - 04:24 PM
You may also find this helpful. On page 3 of the sclero forums there is a person by the name of "scragporter" whose wife underwent a stem cell which was 100% covered. Anyway if you read on page 3 the one called "undergoing stem cell transplant" the info he provides is invaluable. The whole thing itself is 3 pages long and all the "what to do's" is on his 3rd page, near the end. Hope this helps. His name as I remember was Craig and his wife is Sharon. Best of luck to you. I will keep you in my thoughts. My husband remembers a site he was on also that gave a lot of good stuff you need to know before approaching the insurance company. We will try and find it and let you know if we have any luck.
Best wishes to you,
Posted 21 January 2009 - 05:25 PM
Posted 22 January 2009 - 02:42 AM
Was that Anthem BCBS of MN that finally approved the SCT procedure? Thanks. Gidget
Posted 22 January 2009 - 02:53 AM
Unfortunately for me Health First Health Care is a self-funded insurance and as such is protected by a state agency called the Agency for Health Care Administration which protects these self-funded companies from having to pay large claims. And- I cannot afford to hire an attorney. My chances of winning are slim, but I've been riding this horse for almost two years and I've been known to continue beating a dead horse if need be.
Thanks again for all of the support and helpful information! TJ903
Posted 22 January 2009 - 05:15 AM
I am not sure what your sclero issues are -- mine includes lung involvement along with GI and skin hardening. When I was denied the SCT, I was put on IV cyclophosphamide which helped stabilize the lungs. Then I went into the clinical trial for Gleevec which worked wonders for my skin and joints but did absolutely nothing for my lungs. During the time I was on Gleevec, my lungs have since become unstable which corresponds with the timing of when the cyclophosphamide results wear off. So, I am now trudging back to Northwestern to find out how bad do I have to be BEFORE they can no longer perform the SCT.
Anyway, I have since come across a drug Revimmune which I am trying to find more info on. It is still in clinical testing but apparently it works similar to the SCT and consists of a 4 days of infusions where the patient recovers at home while the immune system reconstitues itself over a 2-3 week period. Apparently the drug can search out the defective stem cells while sparing the stem cells in the bone marrow. Something like this may be an option for you.
I also live in FL and go to the Mayo clinic in Jacksonville for my local care. They have been very supportive.
Good luck. Gidget
Posted 23 January 2009 - 12:09 PM
Posted 25 January 2009 - 09:06 AM
Fighting insurance when you are dealing with health problems is a nightmare. You need to send as much evidence as possible I have many research articles, videos and patient testimonies that can help you. The letter which pokey linked to is how we got Blue Cross to pay for it. I helped a lady in Sacremento who got her appeal granted also. You can contact us any time and I will help you.
Posted 25 January 2009 - 06:01 PM