Help! Need some medical research!

My insurance company denied Rituxan treatments today. Their policy is they don't allow Rituxan until AFTER a splenectomy. I know this is complete BS and their policy is WRONG. My doctor's office is fililng the appeal today, and we need to get in as much research as possible to get this policy changed. I've had Rituxan before and it worked for 4 years. I'm 47 and their is NO way I'm having a splenectomy. I am working on doing some research today, but if anyone can show me some more I need:

Success of rituxan PRE-splenectomy

Failure of splenectomy to raise platelet levels in IPT

I think some dinosaur created this insurance policy and I'm determined to put that dinosaur in a museum somewhere.

I would deeply appreciate any medical articles/journals you can direct me to.

Deb Shearer

Deb, in the awful case that you might have to actually foot the bill, keep in mind that you might only need one infusion, especially if you had such a great response the first time.
Good luck, Erica

Our results demonstrated that, when administered before splenectomy, rituximab achieved 33% good responses after 2 years of follow-up. Moreover, compared with historical data, rituximab does not seem to lower the response rate to splenectomy should it be required later due to rituximab failure. Rituximab should therefore be considered a presplenectomy therapeutic approach, particularly for patients with chronic ITP who are at high risk of undergoing the surgery and/or who are reluctant to do so.


bloodjournal.hematologylibrary.org/cgi/content/full/112/4/999

Sandi!

It's you!!! I thank God for you. I am forwarding all of your post on to my hemotologist!!! You are such a blessing to everyone here.

Deb

I'm not done yet!

The most widely recognized long-term risk of splenectomy is overwhelming bacterial infection. More recently, thrombosis has become appreciated as another potential complication of the procedure. Because of these long-term risks, the indications for and timing of splenectomy are debated in the medical community. Accordingly, the adverse effects and benefits of splenectomy for hematologic disorders and other conditions demand further study. This comprehensive review summarizes the existing literature pertaining to vascular complications after splenectomy for hematologic conditions and attempts to define the potential pathophysiologic mechanisms involved. This complex topic encompasses diverse underlying conditions for which splenectomy is performed, diverse thrombotic complications, and multiple pathophysiologic mechanisms.

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861

This one is from 2001, but is still cited on the PDSA site:

Abstract
Sixty-one consecutive patients undergoing splenectomy for chronic immune thrombocytopenia were retrospectively evaluated. Platelet response was considered as complete (CR) when platelet count rose to > 100 x 109/l, partial (PR) when 30-100 x 109/l or absent (NR) if otherwise. Follow-up (mean time 7.6 years) was possible in 54 patients. Forty-eight patients (88%) had an immediate response to splenectomy (39 CR, 9 PR) whereas six (12%) were NR. Thirty-six responders (67%) had sustained remission (31 CR; 5 PR) without further treatment; thrombocytopenia recurred in 12 patients (33%). The probability curve of continued remission showed a constant relapse-rate during the first 36 months; a further step of relapse was observed beginning 70 months after surgery. The only positive predictive factor for the long-term response to splenectomy was age < 40 (P < 0.005). Neither duration of thrombocytopenia nor previous response to medical treatment (steroids and/or intravenous immunoglobulins) were related to splenectomy response.

www.ncbi.nlm.nih.gov/pubmed/11260065

BACKGROUND: Splenectomy is frequently employed for therapeutic and diagnostic purposes in various clinical disorders. However its long-term safety is not well elucidated. Although risk of infection by encapsulated organisms is widely recognized, less well-known are risks of thrombosis and cardiovascular disease. METHODS: We investigated levels of cell-derived microparticles (C-MP) in 23 splenectomized ITP (ITP-S) and 53 unsplenectomized ITP patients (ITP-nS). Assay of C-MP derived from platelets (PMP), leukocytes (LMP), red cells (RMP) and endothelial cells (EMP) were performed by flow cytometry. Coagulation parameters included PT, aPTT and activities of FVIII, IX and XI. Results of all measures were compared between the two groups, ITP-S vs ITP-nS. RESULTS: Levels of all C-MP were higher in ITP-S than ITP-nS but only RMP and LMP reached statistical significance (p = 0.0035 and p < 0.0001, respectively). The aPTT was significantly shorter in ITP-S (p = 0.029). Interestingly, correlation analysis revealed that RMP, but not other C-MP, were associated with shortening of aPTT (p = 0.024) as well as with increased activities of factors VIII (p = 0.023), IX (p = 0.021) and XI (p = 0.0089). CONCLUSIONS: RMP and LMP were significantly elevated in splenectomized compared to non-splenectomized ITP patients. This suggests that the spleen functions to clear procoagulant C-MP, and that elevation of C-MP might contribute to increased risk of thrombosis, progression of atherosclerosis and cardiovascular disease following splenectomy.

www.ncbi.nlm.nih.gov/pubmed/18334267

Yay for Sandi, good luck Deb! Hopefully you can successfully plead your case.

Rituximab appears to be a safe and good splenectomy-sparing strategy in adults with chronic ITP, leading to a significant, durable response in 40% of patients.

www.supportiveoncology.net/journal/articles/0504s272.pdf

Sandi:

Thank you so much for all your help with the research. My hemotologist will get everything in the morning. Thank you so much for your gift of the research to help me fight my illness.

Deb

Deb:

I feel just as strongly as you do about splenectomy. If there are other options, I believe you should have the right to choose and should not be forced into a treatment that you do not want.

Anything I can do to help the cause....

I am so appreciative of all the information on this site and for all the help you have given me. Four years ago when I was diagnosed, I prayed for help and stumbled upon this site by accident. The members and you helped me to decide to have the Rituxan treatments and I was in remission for 4 years.

This time when the platelets dropped, insurance company denies Rituxan, and I prayed, you came through with all the wonderful articles from the medical journals. My doctor thinks all of those articles provide excellent information and that gives us a good voice of support in our appeal. I could never have done this without you and this website! I am eternally grateful to everyone involved here.

Deb

Deb, if you had such a great rituxan remission, I bet you might get another remission from just one infusion. I mentioned this before, and I just wanted to throw it out there again. If I could use Rituxan again but had to pay for it, I would pay for it and borrow the money rather than have my spleen out. I would just have one infusion which was about $10,000 I think.

I hope you work it out with insurance but just in case, remember you still get to decide.
Erica

:woohoo: Today's phone call from the doctor's office was to tell me my count went up to 50 this week. She asked me what I am doing different.

Right before the first blood test I had been on Herbalife products for weight loss. I had managed to loss 10 pounds!!!! YEAH! I started the program because a friend sells the products. I have checked about the Herb-a-life site, but I can't find anything that would make my platelets drop. But, I've been off the products a little over 3 weeks now and my platelets are back up to 50. Hardest part is explaining to my friend that right now I cannot use any Herbalife products right now. She is so confident that these products did not cause my platelets to drop, and I don't want to cause myself any further health problems. I know she's got a lot of success stories for people with heart problems, diabetes, etc., but this is the only thing I can tie back to that I was using right before my platelets dropped. The only other explanation I have is the wonderful power of prayers of all my friends and families.

I will get CBC's once a week. Treatment is on hold for right now. The appeal with the insurance company is progressing just in case the platelet counts drop again.

Deb

That's great news about your count!
What are the ingredients in the products you were taking? Maybe we'll recognize something on the 'naughty' list. There are tons of foods and drugs that have the potential to drop platelets - in most people they don't but they can. And if that is the cause, you are extra lucky because sometimes drug induced ITP is not reversed when you stop taking whatever it is that caused it.
Erica

Came back from a wonderful vacation and newest blood draw shows platelets are up to 55. YEAH! We are currently holding off on treatment.

The appeal for Rituxan is still underway with the insurance company, and I'm sure they will take their time in responding. My hemo and are not expecting a favorable outcome so in the meantime, we put in for a dose of IVIg. One treatment was approved. So, we are holding that treatment in the wings for now.

I still don't know what caused the drop or what is helping with the slow increase.

Anyone ever used Herbalife products? I started on Herbalife in May (and to date have lost 10 pounds, of which I'm so happy about). Hemo took me off all Herbalife products because she thinks that may have caused the platelets to decrease. I can't find anything in the ingredient list (herbs) that indicate anything I should not be taking. As a precautionary, I have not gone back on the products for now.

Next blood draw is Monday, August 30th. Hopefully, I'll see another increase and avoid treatment awhile longer.

Deb

Hey Sandi and Deb!
Thanks for all the readings and info. It is def. helping me figure out what my line of attack is going to be once I drop a bit more. I wouldn't be surprised if my insurance company denied ALL drugs due to the fact the spleen is still attached. to the insurance companies that write all the rules but don't experience any of it. So Rituxan was your magic the first time around. I'll have to research that and remember it when i get to that point.

Again, thanks!

It could be you just losing weight, I have found when whenever I exercise and start to lose weight, I seem to get my platelets up on their own