Anyone had to deal with Florida Blue?

Florida Blue denied me Promacta. (Because I haven't had a splenectomy!) I'm trying to get Promacta so I won't have to have the surgery! I was on prednisone for 2 years and it stopped working. I did a 4 week course of Rituxan, which didn't work. I've had Dexamethasone once and IVIG once before procedures. I haven't tried to Promacta or NPlate, and wish to before having a surgery that does not guarantee results either.

My Dr has spent a total of 5 hours on the phone with Florida Blue. I have spent 2. We cannot get to the right person or department in order to appeal this denial. (My Dr was transferred to The Philippines at one point and Walgreens at one point!) I was transferred to 5 different departments and then put on hold for so long that the system kicked me out 3 times and I had to start back at the beginning. I have Facebook messaged Florida Blue and they say they have sent my message to a support specialist, who I have not heard from.

Has anyone here had to deal with this horrific company? Do you have any inside info on how to get thru? Both my Dr and I are still attempting to reach someone and are having no luck!

I assume Florida Blue is short for Florida Blue Cross and Blue Shield (BCBS), yes?
Here in Texas BCBS sends you a written statement why you were denied. Usually it boils down to one sentence. It also should tell you how to appeal the decision. Have you received this sort of statement?

I can't imagine how it can be ethical to force someone to have a surgery that they don't want or be denied treatment. We are so close to medical tyranny that it isn't even funny. Appeal in writing and good luck!

It is a division of BCBS. Yesterday afternoon I received said denial letter from Prime therapeutics, LLC, the Pharmacy Benefit Manager for Florida Blue. The reason for denial was, quoted: "You have not had a splenectomy (removal of the spleen) or do not have contraindications to splenectomy. A contraindication is a health condition or risk factor that may cause harm if you undergo a procedure." Then there were 4 pages of appeal process instructions. However, I had sent an external review request (before I'd even spoken with someone regarding the denial) and sent a FB message to their site and got 3 phone calls back. They have contacted my provider and we'll see. The whole thing is just ludicrous. And from what I've been told, the patient not wanting the surgery is a contraindication. We'll see.

Are you over 40? You could argue that studies show that after 40, splenectomy has a low success rate.

I am and I did! And I have a whole collection of corroborating factoids to go with that regarding splenectomy success rates. They aren't going to be happy with me, but so what?

A splenectomy is contra indicated if you don't want one.

OK in the UK at the moment we are still lucky to have an NHS so I don't have to jump through these hoops.

Our guidelines are
Eltrombopag is recommended as an option for treating adults with chronic immune (idiopathic) thrombocytopenia purpura in adults who have had a splenectomy and whose condition is refractory to other treatments, or as a second-line treatment in adults who have not had a splenectomy because surgery is contraindicated), only if: their condition is refractory to standard active treatments and rescue therapies, or they have severe disease and a high risk of bleeding that needs frequent courses of rescue therapies.

The fact that there is absolutely no guarantee that removing a perfectly healthy organ, doing it's job properly , will work and the long list of possible complications is a contraindication as far as I am concerned. I will not be coerced into any treatment I don't want. Patient choice must be respected. My spleen is still in place.

Look at D Mann's post splenectomy experiences on his posts. Fight it all the way. Cite all the risks etc . Ask them if they are going to pay for all the annual vaccinations you will need once minus your spleen.

Not to mention that the risk of clotting goes up after splenectomy and using a TPO afterwards adds to that risk. This is making me mad.

"Florida Blue denied me Promacta. " Actually they only denied "paying for it". There is a long list of drugs and procedures insurance will not pay for and it has been that way forever. Even Medicare will deny Promacta and I don't know of a Medicare part D drug plan that will cover it unless you are paying more for the policy than the drug would cost on a cash basis. I replied only to say that Medicare and my part B supplement covers my weekly CBC and Nplate 100%, and it is NOT cheap. I would quickly check to see if they will cover Nplate since it is an injection that must be administered in a hospital-clinic type setting by a nurse. Nplate is working for me very well, best of luck!

They have their formularies, but I have appealed and won. Is N-Plate more expensive than Promacta? If so, they would be cutting off their nose to spite their face by covering that and not covering Promacta.

Yes, Nplate is more expensive that Promacta. I was denied Nplate by BCBS of California. It took a year to get Nplate approved. Very stressful because I continued getting the injections even though they weren't getting paid so I was racking up huge bills! Ironically, I had been getting Promacta for free from GlaxoSmithKline drug company when I had NO insurance. Now that I had insurance, I couldn't get anything!

The women in the business office at my cancer clinic were just so great, they assured me that BCBS would end up approving and paying, they just had to keep pushing. They told me there is some kind of law that the insurance companies have to pay for treatment even if its not on their list of approved treatments. But of course its not easy. I went through all of the appeal process. I wrote a letter explaining that I didn't want a splenectomy and listed my reasons. Also listed my treatments that had failed- they wanted me to have failed 3 treatments. I think in the end it wasn't anything I did, it was what the authorizations staff at the cancer clinic that really knew how to get things approved . Also it helped that my particular medical group- St Joseph Health has a policy of no one being refused treatment no matter what their ability to pay. That has been a constant comfort.

So yes, penlyn you go for it! its worth a fight to get the best treatment and to save your spleen.

So I went from 16 to 194 after one week on my contraband sample bottle of Promacta.

Love that Promacta

193 is what I did after 11.5 days on 50mg. Are you on 50 or 25mg? As I recall from your count history, I would expect you to be more sensitive then I. And you may have trouble with stability.

50. But since I was denied again, and I only had a 2 week supply, I was thinking about dropping to 25 to make the supply last longer (?) It was just a CBC yesterday, so I didn't get to see my Dr. I'm sure she will see the count, but I want her to be working in the appeal!!

That's fantastic! You should be able to lower that dose and maintain a safer number. It's worth a try.

So I was denied officially AGAIN. " The use of the prescription drug Promacta for the Covered Person's condition does not meet the definition of medically necessary. The records sent in show that you have a low platelet count. However, the records do not show that you have had a splenectomy and that you low platelets have recurred. The records do not show that you have a contraindication to having your spleen removed."

Get a doctor to enter into your records that as patient choice is paramount a splenectomy is contraindicated because you don't want one.

Success! The MCN reversed Florida's Blues denial and I am approved! Of course, the side effects from this drug have had me on my butt the last 2 weeks! I dropped from 50 mg the first week (which brought my number from 16 to 194) to 25 the second week (which brought me to 156) and now I'm doing 25 mg every third day. Test again on Tuesday. Still have a banging headache and a horrible rash. Not sure if the rash is related but am going to dermatologist this morning to try to get some relief. Hoping the headaches will begin to ease soon.

Great news! Hopefully you can get past some of these side effects and it will end up being an effective treatment for you!