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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 DBHYGRELL

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Posted 04 April 2007 - 04:46 PM

Hello,

It's been awhile. Nonetheless, I was accepted for the ASIST trial, but have been denied insurance coverage. I am very angry about this situation and am doing everything I can think of to get the coverage. I am on the verge of losing my job because I feel awful and can't work. So two weeks ago I am diagnosis with Fibromyalgia. That makes sense, but doesn't make me feel better.

On to the meat of the story...

I want to go to the local media because I have been denied investigational or clinical trials by my insurance and I work for..... wait for it..... a university that touts itself as a research institution. Is this total hypocrisy or what!!!! Employees of a research institution don't get coverage for research. I am awaiting talking to a lawyer before contacting the media - don't want to lose my job. Do you think others will care about this? This is a major medical center where I work...

Also, the medical personnel who performed the second look (brain freeze) was an oncologist. What does an oncologist know about Scleroderma....

Thirdly, I have contacted my local representative to see if he can help.

I just wanted to share my story to see if anyone had any ideas that could help me. I feel horrible and I just know that answer is a stem cell tx.

I can pm my e-mail and associated documents if your are interested.

Thanks for looking and sharing your opinion,
Denelle

#2 Shelley Ensz

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Posted 04 April 2007 - 05:55 PM

Hi Denelle,

I'm glad you were accepted for the ASIST trial but sorry to hear you can't get coverage, yet. I think you are taking the smart approach by definitely talking to a lawyer before you do anything at all. You may have some more appeals to pursue first, and they can advise you regarding any employment repercussions. Most employers don't respond well to any sort of public criticism or pressure, and although some people may feel very (understandably!) sympathetic, they probably won't volunteer to pay your rent or your medical bills if you lose your job over it all.

So know all your legal rights first! There's not very much protection for people who are ill or disabled, and the options are even more limited when it comes to paying for costly experimental trials. Sorry to say, often it is the rich folks who get the fanciest experimental treatments, or those who have truly outstanding fundraising abilities.

The folks at your ASIST center should also be able to advise you regarding financing options, so do keep them apprised of what's happening. I'm sorry it's so rough. My thoughts are with you.
Warm Hugs,

Shelley Ensz
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.

#3 LisaBulman

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Posted 05 April 2007 - 01:31 AM

Hi Dennelle,
I have been in a few studies in the past and have never needed insurance to cover the study. The facility(company hosting the study) covers all of the medical expenses. Why is this study different?
I would definately go about it with a cool head and get all your information before you do anything that may cause you to loose your job.

Please let us know what happens!
Hugs,
Lisa
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#4 Gidget

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Posted 05 April 2007 - 01:17 PM

Denelle,
Yes - I was also accepted in the Northwestern ASIST trial back in January. My insurance Blue Cross Blue Shield denied the coverage as it is "investigational". I have exhausted all my appeals and the coverage was still denied.
Yes - I went to my local representative who put me in touch with CT's attorney general's office. He reviewed my file and basically told me that since my company's insurance plan is SELF FUNDED meaning that my company pays for up to $75000 of health expenses per person after which Blue Cross covers the rest of the expenses ie. a stop gap policy. Because of my insurance is a self funded plan, it runs outside of insurance state law. As such, I do not have the right to such things as a hearing, etc.. He suggested that I have the doctors write a letter to BCBS outlining that the study has been successful and outlining that there are no other alternative treatments. He then said that I should take it to my company and see if I can get them to reopen the case with BCBS and see if my company will agree to pay more in order for BCBS to cover the procedure.
Yes - I have been to my state's Health Advocate. I have been playing telephone tag with her and am not sure what her response will be but I am not hopeful that it will anything much different from the Atty. General's response.
Yes - I have the name of an atty in the event I want to file a law suit. The clock is ticking as I think I only have 90 days from the final appeal per ERISA law. The purpose of the law suit would not be to win (as I won't) but rather to gather information as to if BCBS had ever covered a similar treatment in which case it would negate the "investigational denial".
Yes - I have been back to Northwestern to see if there is any grant dollars available (the answer is no). They suggest fund raise.
So while I push this rock up a hill, I have started IV cytoxan to slow my lung progression. In the meantime, I am considering changing jobs for different health insurance or looking to see if I can buy my own plan. It is frustrating as I always thought I had "great" insurance -- silly me.
Hope my experiences help. Gidget

#5 DBHYGRELL

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Posted 05 April 2007 - 02:04 PM

That is horrible. When I talked to a lawyer today he seemed to think I might have a case because parts or all of it are covered by medicare and medicaid. Otherwise you and I are in the same boat... which is totally unfair. Have you been working with Greg Dean?

Denelle

#6 americanmike

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Posted 05 April 2007 - 05:51 PM

Get a good lawyer. But sadly that costs as much as a stem cell transplant. ;) :angry: :blink:

ok a bit of an exaggeration. but very expensive.

Gidget you said you won't win. Don't believe whoever told you that.

1) Any court case is taken seriously. Sue for damages calculated at what damages are happening to your body while the process is delayed. In 3 months you might lose x percent diffusing capacity in your lungs. What is that worth... 2 million, 10 million??

It's a game of bean counting costs, losses, profit maximization and loss minimization.

If you are suing for alot of money sometimes it doesn't matter if you will win or not. If they lose and fighting the case should cost more than the transplant. The law isn't about whether you win or not... or how good your case is. It's a numbers game. And my novice and humble opinion is your damages can be valued at millions and millions after all it's your life. So let them have it!!!!!

2) When is a procedure Experimental vs. approved. Who approves, who decides. Stem cell transplant for scleroderma and other autoimmune disease has much, much good results already. And some insurance companies cover the procedure already. I think United Healthcare does. Get in front of a jury and tell them all the good stuff happening and then tell them you are being left to die. I can't see how you won't win.

3) don't get down. keep fighting. and keep looking for a lawyer who will fight for you. search craigslist, post an ad seeking help Pro bono. Look for a young lawyer who wants the challenge. A big hotshot might not be the person for the case. Just getting into the court room will bring you so many benefits. Find (a lawyer), File (the case) and get your day in court!!!!!

#7 Shelley Ensz

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Posted 05 April 2007 - 06:07 PM

But, of course, we are not lawyers and do not take any of this as legal advice. Continue to confer with your lawyer. I've heard that it generally costs about one-third to one-half the cost of a transplant, to hire a lawyer and go to trial. Sometimes that is effective in gaining coverage, but it still leaves you stuck with a whopping legal bill.

Which is why it is usually the rich people who get the transplants -- they can afford the lawyers to (try to) make the insurance companies pay for it. It's also possible to end up hiring a lawyer, going to trial, not getting it approved, and still being stuck with the legal bill. So please keep your eyes wide open as you explore the alternatives!
Warm Hugs,

Shelley Ensz
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.

#8 summer

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Posted 05 April 2007 - 07:54 PM

Hi all,
Just wondering :huh: does anyone know how much a Stem cell transplant costs?
I live in Australia so I would have to pay for it myself, and , also what is the usual criteria?

Lisa, Do you mind if I ask what studies you have been on in the past?, and was it worthwhile for you?

Many thanks
Celia :blink:

#9 Gidget

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Posted 06 April 2007 - 05:56 AM

Denelle,
Yes - you are right -- if you have medicare/medicaid -- stem cells are covered as otherwise it would be "discrimanatory" that people on medicare do not have access to the best medical treatment. I am 43 and not on medicare/medicaid and will not be on it for a long long time.
Yes - it is correct that United Healthcare is covering stem cells transplants.
Good luck with everything. Let me know if you find a way to get yourself coverage. Gidget

#10 Shelley Ensz

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Posted 06 April 2007 - 08:14 AM

Hi Celia,

As I understand it, costs for a stem cell transplant can range from about $100,000 to $250,000. Sometimes there are severe complications, so it can possibly cost more than that. It also requires a lot of time, generally residing near the transplant center for a while before, and after, the procedure. Sometimes people die during stem cell transplants, with widely varying statistics based on the illness, the medical center, the type of stem cell transplant done (there are different kinds), and the overall health of the patient in the first place.

Because it is so very costly, and such a severe measure, the ideal candidate is generally someone who has severe rapid-onset diffuse scleroderma, with a very bad prognosis...as well as great medical coverage or substantial financial reserves. They are trying to make the procedure safer, and available to a broader category of patients. In short, it is still being studied and perfected.

Dave recently had a stem cell transplant, and we have his blog link around here someplace. He can also chime in with his experience on it!
Warm Hugs,

Shelley Ensz
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.

#11 summer

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Posted 06 April 2007 - 08:57 PM

Thanks Shelley for answering my post <_<
Kind regards
Celia

#12 Shelley Ensz

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Posted 07 April 2007 - 01:08 AM

You're welcome, Celia. I just wish it was better news regarding price, availabililty, suitability, and outcome for everyone.
Warm Hugs,

Shelley Ensz
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.