Insurance denied Rituxan

Here's a quick rundown. My platelet counts are staying between 25-36k. That doesn't sound bad compared to a lot of the chronic conditions out there and on this site, but I'm having tons of symptoms. I'm covered in bruises, my teeth bleed every morning for about 1/2 hour, I have about 2 bad nose bleeds a week, and now the blood vessels in my ankle seem to have ruptured and it hurts like crazy. (This happened in my wrist shortly after I was diagnosed too.)

We've tried IVIg and Dex already, with no improvement shown. My doctor says that my two best options are Rituxan or a spleenectomy. Having surgery when I'm bruising this easy terrifies me, so my husband and I voted for the Rituxan. My insurance company has come back and said that the only way they'll pay for Rituxan is if I have cancer. My doctor tried to appeal it, but was unsuccessful.

We've discussed NPlate, but my doctor feels that I'm too young to get injections every week for the rest of my life. He'd rather see me get a spleenectomy over that.

Is there any way to find funding for Rituxan without insurance? Or is there a different treatment that we haven't tried yet?

If the best option for me is a splenectomy, I'll do it. I just need to make sure before I take the risk of surgery!

Nicki

Maybe you should get a second opinion, it seems many doctors have a different opinion about nPlate. There are even children who are using nPlate. I'm not sure though if they've had their spleens out or not. And getting injections every week (if it would be the rest of your life isn't really known, that seems a bit uncertain!) isn't the worst thing in the world - many conditions require all sorts of injections. What does your doctor have to say about the risks of having no spleen compared to using nPlate?
Erica

After reading Joan's book, Wish by Spirit, I will never consent to having my spleen removed.

I would get a 2nd opinion and do what you need to do to get the insurance to approve the Rituxan. I would go so far as to seek an attorney to help you if you need to. Rituxan worked for me and kept my counts over 150 for 4 years. My counts are now about 32 and we're holding to see if I need another Rituxan treatment. I would say your best best is to battle the insurance company on this one and get the treatment you need.

I have a very similar situation. I'm 24 and it seems I've had ITP since before high school, though I wasn't diagnosed until August of 2009 with a platelet count of 11,000. I had 8 Rituxan treatments last year, which didn't really do anything for my count. Right before that I had an IVIG treatment, which worked well, but, of course, was temporary, and I had an allergic reaction. I have been on Prednisone for almost a year and that works in high doses. Decadron also works great, though the emotional side effects are too much handle. (I stayed up all night pacing and crying.)

The Rituxan treatments have amounted to just shy of $200,000 and my insurance is denying coverage almost completely. (They will cover $2,500 per every $26,000 Rituxan infusion.) I am currently appealing my insurance's decision and applying for financial assistance from the manufacturer of the Rituxan. The maker has a reimbursement support program whereby they replace the Rituxan for the medical institution if the patient meets financial assistance requirements and provides a denial from the insurance company (after the appeal). I am still, however, working on figuring out a plan to take care of the IVIG treatment that was also denied by insurance.

Currently, I am trying to sort out those claims, along with $500 weekly or bi-weekly doctor's visits to check my counts, etc. I'm also trying to decide what course of treatment to take next, as my levels are somewhere in the 30's. My hematologists have been pushing splenectomy for the past 6 months or more, but I am hesitant to lose my spleen, since the success rate is not all that impressive. I am considering nPlate, but the idea of getting weekly injections that may or may not have adverse long-term effects makes splenectomy not look so bad, especially being so young.

Let me know if you have any advice, information or statistics. If I can help at all with anything, please drop a line.

Christine

There are other treatments [prednisone put me in a "remission" and later WinRho did too - "remission" to me is decent counts & no treatment]. If you go to the top of the page, just under the PDSA logo you will see Treatments, you can click on that.

www.pdsa.org/treatments/conventional.html
This give you a list of treatments and you can click on them to read about them. Anti-D is what you see in posts as WinRho.

The SPOC once paid for my Rituxan treatments. I'm not sure if they still do for ITP, but you could try.

www.spoconline.com/spoconline/doc/ritRa/rituxan_ra_spoc_smn.pdf

Thanks so much. I have tried many forms of treatment, and the next - and seemingly safest - step is most likely splenectomy. I am stalling the surgery and checking out other options, though.

Sandi, the link that you provided is the exact financial assistance program that I am currently trying. Good to know that it worked for you. I have heard that Genentech is a great company and is always willing to help. Thanks!

Christine

Thanks! I'll talk to my doctor about that SPOC and hopefully that might help.

I can't take prednisone, because steroids turn me into a MONSTER and I love my children and don't want to kill them! WinRho isn't an option because I'm also anemic (always have been), and WinRho kills off red blood cells when it works. My doctor dismissed it right away with my blood counts.

I found out today that I was also denied for Rituxan, so I am immediately filing an appeal and will call the doctor tomorrow. Prednisone is not an option for me, so I need a treatment plan from the doctor if the appeal gets denied. I can't understand why is has been determined "unmedically necessary" when the Rituxan worked before and held for 4 years.

I can't believe they are denying this treatment for you guys. It makes me want to wrap my hands around their necks and....squeeze..... Hopefully, you can find a way around their bullshit. Also, don't let this get you down. It will all work out in the end.

Natalie

Well, after two appeals to the insurance company, I guess I'm stuck getting a splenectomy. Apparantly if I get a splenectomy and it doesn't work, THEN insurance will pay for Rituxan. We tried going to the manufacturer to see if they would provide it free of cost. They checked with my insurance company and said that since I have insurance that is willing to pay for it AFTER a splenectomy, they won't help me. I HATE ALL THIS RED TAPE!!

Now its hurry up and wait for someone to call for my surgical consultation. I'm nervous!

Nicki

That just doesn't seem right. Have you thought about other alternatives?

I gotta agree with Sandi; that doesn't seem fair! You shouldn't have to get a splenectomy if you don't want it. Good luck.

have you spoken to the insurance company yourself? I wouldn't take anyone's word for it, I'd have to talk to them myself. Sorry if that was covered already, I didn't read every post. I did see that WinRho isn't an option for you, have you tried NPlate? There is an organization that paid for my NPlate. Not sure if they would do Rituxan, but I could look it up if you want me to. Let me know.

I have spoken to them myself. They're pretty adamant that they won't pay for the Rituxan until after splenectomy. What organization is it that helped you out? I'd like to take a look at it if I can!

it's called The Safety Net Foundation. Quoting their papers..."The Foundation is a non-profit organization that helps needy patients obtain access to Amgen products."
Looks like if Rituxan isn't made by Amgen then they can't help you. Good luck!