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September 16, 2014 at 4:42 pm #22169TeamMattParticipant
Here’s some new info on Matt, who is scheduled to go to MD Anderson early next week to start the first phase of a projected three-phase experimental trial, beginning with Yervoy, IL-2 and several chemotherapy drugs.
The insurance company, Cigna, has rejected our first request to cover the Yervoy/ipilumumab. Our understanding is that this is pretty common, and that you need your doctor to talk directly to the insurer to make the case. Does anyone have any wisdom on how to handle this situation? Or good war stories to share?
In the meantime, MD Anderson has suggested an alternative. If Matt agrees to a slightly different treatment regimen, they would increase the dosage of Yervoy from 3 mg to 10 mg, and the cost of the Yervoy would be covered by the pharmaceutical company. (The trial is in part intended to determine the maximum tolerable dosage of Yervoy.)
Obviously, we’re worried about the increased toxicity and are trying to get some clarification on the risks. Does anyone have any experience with or intelligence about such a high dosage?
Is this kind of shuffling around common when you think you’re all set for treatment? It’s very disconcerting.
Thanks!September 16, 2014 at 6:07 pm #65425msue5Participant
I didn’t have trouble getting approved for Yervoy but the infusion clinic was not informed that they had to get drug from my insurance pharmacy. They ordered it through the hospital pharmacy and I was charged $56 thousand dollars for the 1st dose. It took 6 mos to finally get insurance to pay. I would think with Documentation from your Dr. you may get approval. have found that things that are resubmitted are usually approved. Damn Insurance companies! My insurance is trying to get out of paying for quarterly PET Scans. Every time my Dr. Has to remind them that I still have active disease that needs monitoring. But at least I have insurance. I try to remind myself how lucky I am to have something unlike many people in this country. Yervoy is an approved standard first line therapy so what is their denial based on?
Mary SueSeptember 16, 2014 at 8:12 pm #65426MathewRParticipant
My guess is that while 3 mg ipi is the standard of care, the insurance company may not be obligated to cover it when used in combination with other drugs in a clinical trial. It’s unfortunate that the trial sponsor won’t cover the cost of the lower dosage of ipi.
My two cents on 10mg ipi–if Matt needed a “hail mary”, then absolutely worth pursuing. However, my recollection from your earlier posts is that Matt does not have a heavy disease burden. While I certainly understand the “aggressive” mentality, the combination of 10mg ipi, IL-2 and chemo has potential for major (permanent?) side effects. I’d ask MD Anderson the following:
1. Have other patients been able to tolerate this combination at 10mg? (Is Matt the first patient?)
2. Have the side effects been worse with this combination? Permanent?
3. What happens if Matt cannot tolerate the treatment? What is the next step?
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