After almost 8 years on Ibrance my scans show an increase in bony Mets. My doc wants to change me to Piqray and I have been tested and carry the mutation that this med is suppose to respond to. However….after multiple appeals and an external review,…..it has been denied. That is the insurance company’s final decision. The denial reason was because the studies don’t show this drug being used when ibrance fails.
have any of you experienced this?
what did they advise next?
did you find any way around this?
Any help/thoughts are appreciated.
Written by
Fight2016
To view profiles and participate in discussions please or .
I know that Pfizer had a special program that I would have used had my insurance not covered it. Maybe Novartis has such a program? Could your doctor help you with that?
Novartis has a program that provides free meds, through a foundation administered by a third party. You have to send a tax return and an application. I found them a bit hard to deal with. I think you can start the application on line, but your doc has to complete part. Better than insurance!
thank you so much! I will review these and hopefully forward them on as support for the medication. The person on the insurance side that reviewed it said “it isn’t medically necessary” and the study that was submitted by my doc as evidence was not conducted on people that had tried and inevitably failed Ibrance….so he was denying it. Went as far as to make sure we all knew he had been doing this since 1993.
I hope you get a decent resolution. As if having the disease isn’t stressful enough! The doctor’s recommendation should be enough. Insurance companies are out of control!!!
This may not help at all because it’s along the same line of drug, but Truqap is supposed to be not as hard as Piqray. They will probably deny it too, but maybe you can get it through the manufacturer instead. I am in shock that they could just deny Piqray. I’m sorry you’re going through that.
From what I have read Pikray seems to be standard of care for CDK 4/6 resistant MBC when the mutation is present. It is crazy that you were denied! Hopefully you can get it through the mfg. Are you on Medicare?
I have had insurance denial (after the procedure of an MRI on my pelvis for a cancer mass near my ovary). I am MBC stage 4 and we followed the insurance company's protocol prior to the MRI yet still got the " not deemed medically necessary." I took it to my oncologist and she flat out said that I won't have to pay for it. I am on Ibrance also and what you are going through may be a concern for many of us when Ibrance fails. Because you have had already an external review and even then were denied, I would recommend an attorney that specializes in 'bad faith insurance" (a lawyer that works with insurance claim denials "not deemed medically necessary" for cancer drugs) in your state. If need be you may be able to sue the insurance for the denial and get the denial overturned. In the meantime there are ways to get help with the cost of piqray directly through the manufacturer. There's an organization that can help you with it PAF (Patients Advocate Foundation) here's the link to their website patientadvocate.org/. They work for free to help cancer patients. Let us know what happens in dealing with getting the cost of this medication covered.
I was put on immunotherapy study after Ibrance failed. I was on Ibrance 6 years. The immunotherapy did not work. So I was put on Piqray. I am on Medicare and Tricare. I didn’t have any problems with approval.
it was the only drug that made me very sick. I had fever, sore mouth, could only eat macdonalds shakes and pasta with cheese sauce. Taste completely wierd! No appetite rash on face and upper body itchy legs at nights This was second and third weeks I lost 13 pounds in 3 weeks my normal sugar counts went up to 365! I was miserable! Then oncologist asked me to try and hang in there one more week I did and during that week things got much better I miss Piqray I last 50 pounds on that drug with no effort I was 185 pounds and got done to 137 loved that side effect I did get adjusted to it But it only lasted a year for me
I do all this research in mbc, but most of the medications are not available to me because I have metastatic endometrial cancer. It takes at least 3 to 5 years after they have been approved for mbc for drugs to be approved for us. So that means that Medicare and/or insurance may not pay for their use off-label. Ibrance is considered off-label, but I have managed to be on it for over 6 yrs. Just had two recurrences, so the doctor lowered the dose (100 mg had become toxic to I had to take extra weeks off). If this level remains ok, the next step is adding a serd. Hopefully, I can hold out long enough for Piqray or some other pik3ca inhibitor to be approved or to be put on a trial.
If you have the stomach for a fight, I would challenge the decision. Someone else suggested a state insurance regulatory office--they might help. Or, a patient advocate organization. What state are you in? Some legal aid agencies will help with this sort of things as well. This makes me angry!
I’ve scanned through the many replies and didn’t see anything about the PIK3CA mutation. This is the MBC mutation for which Piqray was specifically created to address. Ask your oncologist to test you for the mutation. If you have the mutation, Piqray is the new standard of care. If no mutation, you will need another treatment. Hope this is the pathway for your new treatment!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
piqray
PIK3CA mutation and Piqray with Faslodex (Fulvestrant)
Has anyone had dry facial peeling skin from Ibrance and Letrozole?
