Hi All,
This is a terrible thread to be posting, but perhaps uplifting to those with similar issues. I have been involved in a fight for coverage for Remicade treatment since October of '05. After my fab DrM sent in supporting information, and I had initiated treatment ( in Sept ), I got a notice from BCBS that they paid for the Novemeber treatment.
Fool that I am, I thought I was good to go, that they would cover the previous treatments ( 8K worth ), and all would be well. After all, I had been covered for Enbrel by the same insurer for more than 2 years.
In January, I got a notice that they denied the December treatment. The same week I was completely clear from remicaide. Immediately I began the medical review process with my Dr's office & BCBS. They denied again.
To make a long story short, I went through this review process three more times, each ending with a denial. The reason for the denial was that I was seeing great relief for the skin disease, and that was the intention of the treatment, the pa was not being treated primarily.
In order to overcome that, I had to provide documentation of the pa dx ( which I have actually had for 28 years ). Because there was so much more information in my medical records about the skin disease, BCBS kept denying.
So, I did these things:
1. I asked the Foundation to write a letter to BCBS on my behalf, and send me a copy ( which I used over and over again ).
2. I got in touch with Centocor's Advocacy department and enlisted their assistance.
3. I continued to provide medical notes and records to counter every reason for each denial.
4. I called them often, and always had a witness on the phone. I kept a file and took notes as to every conversation, date & time, as well as what was said.
5. I wrote a letter of complaint to the Insurance Commissioner in my state, and sent a copy to BCBS. ( It turns out that not many patients actually do this, so the Commissioners actually pay attention and make inquiries ).
6. I talked to the BCBS representative about going to the media with my issues.
On Thursday this week I finally got approval for previous treatments and continuing ones. One thing I can tell anyone fighting for access to treatment is to be tenacious, do not give up! The other thing I can say is that with most insurers today, you want to continue with the " Medical Review " process as long as possible, do not ask for an " Appeal " until you have exhausted all other avenues.
In closing, I will say that this is not the first time by far that I have had to fight tooth & nail for coverage for medically necessary treatment ordered by my Dr. Anyone wishing for assistance with these issues is welcome to contact me personally, and should certainly seek the assistance of the Foundation .
I hope this is helpful to others facing these issues.
Respectfully,

Congratulations PJ, guess they didn't know who they were dealing with. The never give up PJ. Again congratulations. Trace

PJ,
I'm so glad you are covered. I even had nightmares last week. I dreamed that Blue Cross started to deny my coverage too. I dreamed they insisted that I apply for state assistance first, and it was this bizarre battle. I will make copies of your post, and get ready to assert my right to an effective medication when the time comes to go to change medications. Thanks for all of the great advice!
Ann

YAHOO....good for you! You fought and you won the battle!
Unfortunately, getting treatment can sometimes seem like a war. You gave some great suggestions and guidelines for us all to follow.
I'm printing this page for future reference!
Alli

1 Attachment(s) Congrats PJ all that hard work paid off. Its a shame you had to go through so much, but you did come out on top and thats what counts.
Patty

Hi PJ
I'm so glad you finally got your coverage! I'm going to print out your message too as I'm in the stages now for getting approval for Humira and my insurance company may give me a hard time too. I'm sure you really went into a battle, but so happy the results were finally in your favor.
Sandy

atta girl..... :)
The Ins. commissioners are good down here. By the way, I thought Murray would send you over to the PA lady and get your diagnosis through a Rhumey...

Way to go, PJ. :) :) Congrats and hats off to you. :) I hate insurance Co's sometimes. :mad:

PJ~
Wow, this is wonderful news! If only to get these medically necessary treatments did not require so much time as to be considered another full-time job it would be so much better!
It's just a shame that so much energy has to be expended on denials etc. etc. It's already difficult enough to come to the decision to get on many of these expensive treatments, but then to have to fight for coverage...ugh, it's exhausting!
Kudos to you for not giving up!

Having met you, I wouldn't dare deny you anything, LOL!!!!!! Congrats.
XOXOXO
Annie

You go girl! They messed with the wrong person when they messed with you and would be messing with the wrong people when they mess with NPF!
Godd for you!!
Lots of hugs,
Deb

PJ, congratulations, I'm so glad you finally got the coverage! Although I'm sorry it took so much effort fighting, and I know it was difficult to have to delay some of your treatment until the issue was resolved.
Thank you for sharing your experience so others have a blueprint...
Doug

PJ,
Congrats to you. I will remember that when I have to battle to continue the enbrel. I know the day is coming for me. I get a feeling the medicaid is not going to pay for it. If you don't mind I might need you help in the near future.
Polly

Hi to all of my Board friends,
Thank you for your support and good wishes and thoughts.
I am glad to see that already this thread might help some who anticipate facing the same issues. I have to say that I have been so concerned through all of this for the patients who either don't even know they can fight a denial, or don't know how. I fear for the patient who gets turned down and just goes home because I know that they will continue to suffer.
In discussions I have had during this time with Foundation staff and others, their concern is the same. If a patient like myself has to go through such difficulty to gain access to appropriate ( not to mention completely effective ) treatment, what does that mean for the others? The thought horrifies me, and has the Foundation sincerely concerned. In fact they are taking action in creating an information packet to assist members who have these issues.
Trace, Ann, Alli, Sandy, Patty, Mike, Tom, Diana, Annie,Deb, Doug, & Polly, thank you each for your support and for thinking that folks shouldn't mess with me. But, they do, and they will mess with all of us. The only answer to that is to never give up, and get all the help we can from any avenue available.
Michael, a special message to you. We were ready to go that route, but it was more expedient to use the x-rays of my spine from January as documenting evidence of severe arthritic degeneration. There has been a rhuemy signing off on the script from the beginning, I just have never seen him. Also, I agree with you that the Ins Comm is really good in NC, we are lucky, and I understand he gets very little fan mail...lol! ;)
Fondly,
PJ

That's awesome news PJ!!!! Congrats on winning the ultimate battle! I'm sure it gives great inspiration to everyone!!!

PJ,
Thanks so much. I know I'm going to be in the same situation soon. I now know that I will never give up. I will be seeing my pcp for the first time in the next few weeks. I hope I can be as strong as you. Enbrel is the only thing that has helped me so much. I worry that I will go back to the way I was before it. That really scares me. I am a strong minded person and I will do whatever it takes to get the medicines I need. If I ever start to lose hope i will definatly be calling you.
Polly

Hi,
Thanks for the warm thoughts, Jillian!
Polly, please call me long before you are in trouble! As you should know by now, I am available to everyone on these Boards who might need a chance to talk with me, if not in person, then certainly by both email and phone.
Polly, you just gave voice to the fear that all of us having success with treatment have, what do we do when IT stops working, or we can't get IT anymore. No matter what the IT actually is, enbrel, humira, remicade, you get my drift. While you say that you wish you could be as strong as I am, I would say to you that you just need to be as scared as I am and you will find your voice.
Access to treatment is an issue for all of us. I confirm to you and anyone else who may need my help, I am available, just ask. If you don't have my contact information, please either send me a pm, or call the Foundation and ask for my contact info. You can always send a pm to Mikek as well, one way or another I am easy to contact and always willing to help!
Respectfully,
PJ Leary

:D Good for you PJ, I am happy for you

hi pj,
that's great news. in happy you won. i have to stay off my feet. im tired of walking in pain.
have a good night my friend
richard

and again congrats.
I believe that Sarah is sending me over to Lisa (the PA) in order to quash any future insurance issues as well as seeing if there is anything that we can do to improve the joints. My current Ins. Authorization only covers 2 years of Enbrel but with a PA diagnosis from a Rhuemy - the authorization is extended to five years.
By the way, if you look up the Physician profiles on the Duke web site, she is the only practitioner that actually specializes in the area of PA - as I have learned that there are many, many forms of Arthritis.
Ciao

What an inspiring message - I can only imagine the grit and determination it took to get this to happen, PJ. Thank you for the great information (yes, I'm printing it too, being new to BCBS and the whole insurance/pa treatment thing), and thank you for your emphatic willingness to help anyone who needs help. I too am sure there are many. The whole doctor/medical/insurance arena is so intimidating to so many. (Just emerging the bewilderment with gritted teeth right now.)
I'm glad that this is a concern of the NPF's, as well.
Thank you, thank you.
Tani

Congratulations, PJ. I know that this was a hard earned victory for you, as well as others to follow. You mentioned one thing that I'm not clear on, and I hope you can clarify it for me. What is the difference between a "medical review" and an "appeal"?
I ask because I have been denied long term disability through my former employer's insurance, and I'm fighting it. I'm not sure it would be the same as medical insurance, but I would think the process must be similar. I'd appreciate any thoughts or tips you could share. Thanks.

Mom,
Congrats on getting approval for remicade. I am glad that you finally got it. I know it has been a long couple of months with numerous trips to the drs. office & MANY phone calls. I hope that your infusion goes smoothly.
x0x
Dee

I just wanted to include in this thread the NPF's Ten tips for being an empowered patient:
Don't get angry, get involved. Be persistent and polite because you deserve the safe and effective treatment prescribed by your doctor.
Ask your doctor for help. Ask him/her to write a "letter of medical necessity" about the treatment in question. Thank your doctor and his/her staff!
Contact the company that manufactures the treatment in question. Many drug companies and light box manufacturers have staff that can help with your insurance problems.
Keep thorough records of all phone calls, letters and contacts with your doctor and insurance company.
Be ready to educate. Assume the claims representatives at your insurance company have never even heard of psoriasis or psoriatic arthritis.
Notify the insurance company of your intent to appeal. If your claim for treatment is denied, send them a letter appealing their decision. Request a free copy of your policy. Ask them to accept information from the National Psoriasis Foundation as part of your appeal.
Contact the National Psoriasis Foundation. We can write a supportive letter on your behalf. Please provide us with your insurance company's address, your patient ID number, and the name of the insurance company's medical director. We will also need any letters the insurance company has sent to you or your doctor.
Notify your department of human resources (HR). If you receive health insurance through work, then HR purchased your plan on your behalf and the insurance company sees it, not you, as the customer. If the HR department puts pressure on your insurance company, good things can happen.
Contact your state insurance commission to report the insurance company.
DO NOT GIVE UP.
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Related links
Insurance assistance
Sample complaint letter to state insurance commission
Sample letter to insurance company contesting a denial of coverage

Seems to me like PJ nearly followed those tips to a tee ( or maybe she was the author :D )
You'll find this info under the advocacy section of the NPF's main web page.