Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

IVIG Infusion Therapy Denied


  • Please log in to reply
9 replies to this topic

#1 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 17 March 2008 - 10:11 AM

Well I have now had a second drug therapy denied by insurance. The first was my doctor wanting to use Rituxan and they denied that. She then wanted to try IVIG and they now denied that. I am at a loss on what to do. To have your health in the hands of insurance companies who dictate what help you get is unbelievable. We sent an appeal letter in but I'm sure it's only a waste of time. Anyone have any ideas on what to do?

Thanks.

Peggy

#2 Guest_SADIE_*

Guest_SADIE_*
  • Guests

Posted 17 March 2008 - 11:13 AM

Peggy, I'm so sorry to hear about this. I haven't had IVG. Wish I could help you out. You're in my thoughts.
sadie

#3 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 17 March 2008 - 11:27 AM

Peggy, ask your local pharmasist for the telephone number and the manufacturer of Rituxan. Call the company and tell them of your plight. The manufacturer usually gives samples of products throughout the year to doctors. They also over discount and free services to those that are denied. They work with your doctors office also. Give that a try. When I worked for a pharmacy we often let customers know of this offer. It doesn't hurt to give it a go. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#4 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 17 March 2008 - 11:30 AM

Peggy,
Do you know what the treatment was denied? Is it considered experimental? Or was it just a monetary decision on the part of the insurance co?
See if your state has a Health Care Advocate office and call/email them. Ask them to file your appeal for you. Have your doctor send the appeal letter to the insurance company and the Advocate. If you do not have a state advocate, then have your doctor. file appeal with insurance company and request that the insurance co. independent consultant review your appeal. If the consultant agrees then the insurance co. will reverse their decision. Ask your doctor. if this insurance co. has ever covered any of his other patients for this treatment. If so, then you may be able to argue that they are refusing you coverage when they previously covered it. Good Luck. Gidget.

#5 Michelle2

Michelle2

    Silver Member

  • Members
  • PipPipPipPip
  • 160 posts
  • Location:San Diego, Ca

Posted 17 March 2008 - 11:31 AM

Ohhhhhhhh I'm sorry to hear that....I'm sure it's more than frustrating. Our shoulders are all here for you!

Best of luck with the appeal!
Take care and stay warm,

Michelle

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 18 March 2008 - 08:23 AM

Sheryl gave you some good information. Also, tell your doctor to pursue this for you. Even if it's denied he/she can go to bat for you, fill out forms, write letters as to the importance of it. Many many times they end up allowing it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 18 March 2008 - 08:36 AM

Peggy,
I'm so sorry to hear that you were once again, denied another treatment. How very frustrating! I don't know who your insurance company is, but for some companies, if the drug or treatment is not FDA approved for scleroderma, then it's hard to get the approval. Especially when the treatment costs as much as Rituxan and IVIg. Both are infusion treatments so that adds tremendously to the cost. I know that my insurance company dishes out $19,000/day for a 3 day treatment of IVIg. The IVIg only costs $4,000/day so the remaining costs are charged by the hospital. The nurse told me they charge $300/hour for me to sit in the chair! I have no idea where the other costs come from.

My IVIg was actually approved for my polymyositis (PM), not scleroderma. IVIg does have a FDA approval for PM. We have been able to show that it is the only treatment that keeps my CPK in the normal range, so thus far, I can get continuing approval. (I keep a line chart of my CPK vs. treatment. My rheumatologist uses it for my on-going approval requests).

You might check to see what all Rituxan and IVIg have FDA approval for try to match another one of your symptoms, blood test results, etc to help with the justification. For example, I keep finding "CD20-positive B-cells" as an indication for Rituxan. So talk to your doctor and see if y'all can be creative.

Keep fighting and good luck!
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 19 March 2008 - 02:14 AM

Peggy,
Keep fighting! I had to fight with my insurance company to pay for an out of network dr to do spinal surgery on my daughter out of state....they paid! We just had to keep fighting. Don't give up!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#9 KarenL

KarenL

    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 26 March 2008 - 05:00 AM

Hi Peggy,

Appealing is NOT a waste of time. I know how frustrated you feel right now. For one thing it's so wrong that we, the patients have to take this on! Secondly, that insurance companies are allowed to govern our fate...grrrr!! I recently went through the appeal process. There was a level 1 a level 2, and an independent review. I had to send them all my records, articles from peer reviewed literature on the treatment, my doctor wrote and we sat in on a panel discussion and got to present our case. STILL they said NO!!! So, then my wonderful, amazing doctor called the company directly. It took him 4 nights of calling, luckily they are on the west coast and we are on the east, so he sat down after work and waited on hold until he finally got through to an actual rheumatologist and was able to convince him. After 6 months of hard work, I got my treatment. Sad end to the story, the treatment didn't work, :( but DO floow the entire procedure, you may get lucky. I know, it's exhausting, but do a little each day and keep at it. Good luck,
Peace,
Karen

#10 relicmom1

relicmom1

    Silver Member

  • Members
  • PipPipPipPip
  • 208 posts
  • Location:Colonial Heights VA

Posted 26 March 2008 - 02:37 PM

Another option may be to get your local congressman involved. I know in our area, there's been a time or two that a resident had similar problems with insurance and they got in contact with one of our congressman and enlisted his help. It's worth a try!! Keep at it!! I used to work in a primary doctors office and he used to get so angry at the insurance companies for this. When you first apply for approval for things, it's usually a nurse following very strict insurance compay guidelines. When the doctor I worked for would get a denial for a treatment, he would demand to speak to a physican who had company authority to override standard policy. Now, of course, being just a primary care physician, the only thing we had to fight for were prescription drugs or MRI's, etc..nothing as costly as this treatment, but if it works.....Keep at them!!
Peace :)
Barbara aka relicmom1