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Please Help-Insurance Won't Pay for My Niece's Meds


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#1 Roger

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Posted 02 December 2008 - 05:33 PM

Hi,

This is my first time leaving a message on this site. My name is Roger and I live in Minnesota. My niece Lindsey in Seattle has Scleroderma. She is in her late 20's now, but she was diagnosed with the disorder at age 10. For the past number of years, she has been taking a drug called Enbrel, which has allowed her to live quite normally and has been a great boon. She was also diagnosed with diabetes in her teens, a condition doctors think may have been brought on by the use of Prednisone at the time.

Recently Lindsey became pregnant with her and her husbands first child. Her doctor advised her to stop taking the Enbrel during her pregnancy. Her pregnancy went smoothly and she had her baby a few months ago. Her doctor prescribed the Enbrel again for her and the same insurance company has now denied paying for it. My sister told me a months supply is $1,300. Now Lindsey's disease and its symptoms are coming back more aggressively. She is on her way to the ER right now with severe knee pain, and her hands and wrists are bothering her much more than normal.

If there is anyone out there that has gone through a similar situation, or know of a friend or family member who has, and has any ideas or suggestions about what can be done to force insurance to pay for this vitally needed medication for my niece please respond ASAP.

Her Rheumatologist sent a second appeal to the insurance company today, and even if they decide to pay they said they will not respond for two weeks, and apparently it takes one to two weeks for the medication to take effect. We are hoping to have this girl back on track by holiday.

Please, any info anyone has let me know. I advised my sister to call the Washington State insurance commissioners office. I believe this to be nearly criminal, to have payed for the drug for all those years, and then not pay just because she got pregnant and had to postpone taking the drug. In an effort to alleviate her symptoms, doctors prescribed Prednisone again, and she ended up in the ER when her blood sugar spiked to 400 over the weekend.

Please help us if you can. Roger

#2 Sam

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Posted 03 December 2008 - 04:12 AM

Roger tell them to keep bugging the insurance company she should be able to get it. I was denied a med but when the doctor did the appeal I got it. So good luck to your niece. I hope she will get some relief soon. Sam
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#3 janey

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Posted 03 December 2008 - 04:43 AM

Roger,

I am so sorry to read about your niece. No one needs to go through these problems when they have a chronic illness. At least she does have a beautiful new baby to comfort her even though, I'm sure, the care of the baby is quite difficult right now. Congratulations to you, your niece and family for their new baby!

In reference to the medications. I agree with Sam to continue bugging the insurance company. Don't even leave it up to the doctor. Your niece should also contact the insurance company. (HEPA rules might prevent you from doing it) If you could find out if they have patient representatives or managed care nurses, that would give her a possible advocate. I have a managed care nurse through BCBS and she's great! She has gotten approval for me on procedures that normally aren't approved in full.

Also you might check out our Free and Low Cost Medications Section on this website. Just click on the link provided. Another suggestion is to contact the manufacturer of Enbrel and see if they can work with the insurance company or provided a few months supply until approval can be received. Once the doctor can show improvement with the Enbrel, approval through the insurance company might be easier. Just go to the Enbrel website. The manufacturer's name is at the bottom.

I hope you get some help soon! It's great that she has found something that really helps. Shame on the insurance companies for not recognizing that! I guess they would rather pay for the ER and other problems that may results without the medication.

I'm so glad you have found us and have solicited our help. You are a wonderful uncle!

Big Hugs to you and your niece,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Shelley Ensz

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Posted 03 December 2008 - 10:25 AM

Roger, can you give us an update on how things are progressing for her now?
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.

#5 barefut

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Posted 03 December 2008 - 08:04 PM

Hi Roger,

I was in a similar situation with Cellcept and found out that the manufacturer has a patient assistance program which offers the medication for free for qualified patients. Maybe Enbrel's manufacturer has a similar program.

Best wishes,

#6 Roger

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Posted 04 December 2008 - 04:13 AM

Hi Shelley,

Well, for starters, thanks in no small part to you, she will not be taking the prednisone. They were able to get her an appointment for next Tuesday with Virginia Mason. She has an appointment today to see a gastroenterologist for nausea and stomach issues she has also been experiencing lately. They were debating on whether or not to keep this appointment or wait until they go to Virginia Mason but I think they are still going.

Also, regarding the outdated Enbrel, she is not going to take it. We could not be reassured it wouldn't be an issue. My sister and brother in law are going to purchase the $1,300 one month supply today out of their own pockets which will hopefully by them the time they need to get the insurance issue straightened out.

I believe that through this process things will be brighter for her. Hooking up with Virginia Mason with specialist trained in this disease will be huge for her. I am also encouraging her and my sister to get involved with your organization and your website. It will be an invaluable resource for her in the future. Had she taken an active role earlier, I believe many of these issues could have been prevented, as she would have known about the specialist in the area. Why her current doctors would not recommend her to them is a matter of concern to me.

I have received numerous responses already to the post I placed the other night, one from a lady in the Seattle area. Lindsey really needs the support of your organization. Bless you for what you do.

Roger.

#7 Roger

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Posted 04 December 2008 - 04:16 AM

I don't think they would qualify. My sister and her husband are buying a month's supply for her today until the insurance issue gets straightened out. They are filing a complaint with the state insurance commissioners office who told me yesterday they will send a letter to Cigna after they receive it.

I am confident they will be forced to pay as she has a history of this drug relieving her symptoms, and it is obvious without it she cannot function normally.

Thanks for the advice,

Roger.

#8 Roger

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Posted 04 December 2008 - 04:16 AM

Thank you.

#9 Roger

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Posted 04 December 2008 - 04:19 AM

Thank you. Her parents are buying a month supply of Enbrel for her today out of pocket ($1,300) until the mess gets straightened out.

I am confident with the wheels that have been put into motion on this they will be forced to pay.

Thanks for all that you and your organization does. I am sure Lindsey will take a more active roll now with your group. It is vital for her to stay educated and have the support of other struggling with the same issues.

Roger.

#10 Shelley Ensz

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Posted 04 December 2008 - 06:04 AM

Hi Roger,

I am glad you are all getting things straightened out for Lindsey. She is very fortunate to have you investigating and advocating on her behalf for better care!!
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.