I am overjoyed to write that we finally received Kevin's crizotinib (brand name Xalkori) yesterday at no co-pay, fully covered. Cigna also covered 100% of the cost (no co-pay, no deductible) for an adjustable hospital bed, so Kevin can now sit and lie down much more comfortably.
We had been working with the Cigna representative for Activision Blizzard, and despite my anger at Cigna because of all the delays and denials of services (delays and denials that have materially affected his health and mental well-being), I am grateful for Julie's efforts on our behalf. Cigna will make an exception on some agreement with Activision Blizzard, she told me what it was but honestly I wasn't really hearing anything except "we are authorizing the medication" so I'm not sure what it was. I don't wish to sound ungrateful, but I only wish this had happened sooner, before his health was allowed to deteriorate to this point. Because we managed to get chest CTs instead of the PET scan that kept getting denied (the whole point was to differentiate between radiation fibrosis and actual met growth), we've dropped the PET scan as the mets in his lungs have advanced to the point where there's really no point in putting any further energy into trying to get a full scan.
We have an appeal in process to get his gene sequencing claim paid for. Foundation Medicine (the company that performed the gene-sequencing) is assisting us with the appeal for the $7200 bill. They said they'll help us up to three levels of appeals, so I guess we'll see.
Otherwise than that, my goal is to just keep Kevin in relative comfort, keep him moving so he can stay independent, and hope the crizotinib will help slow down the progress of the disease, wishlist hope is that we see stability, maybe even reversal. It's a lot to hope for, but I'm glad that I'm at least supported by my work, friends, and family so I can be at home with Kevin.
Saturday, July 12, 2014
Monday, July 7, 2014
Our Troubles with Cigna Health Insurance
It's been a while since we posted. To be honest, during periods of low cancer activity we've been trying to focus on having "normal" lives. Hah. The cancer was relatively stable for about a year and things were calm enough so I could actually ship my game. It sounds selfish, but making WildStar was really important to me and I wanted to be there to see it out the door. It was a relief for a few golden months to be stressed over nothing more than making deadlines and dealing with annoying coworkers.
Then Kevin's health took a nosedive in 2013, and now we're in 2014 with brain mets, lung mets, sternum mets, and the sacrum met (which appears to be mostly inert from radiosurgery performed in 2013).
This post is so people can follow a timeline of our tussles with Cigna:
July 2012 - Surgery in Germany for laser resection of lung tumors, left lung
Nov 2012 - 2nd Surgery in Germany for laser resection of lung tumors, right lung
Cigna Response: Denied, based on policy with Kevin's employer that no surgeries allowed in foreign countries, unless emergency in nature
We chose not to appeal this, after all it was clearly laid out in the handbook, so we paid roughly $70k out of our own pockets. Amazing friends promptly set up a fundraiser and replenished our thoroughly depleted coffers.
May 2013 - Discovery of 5cm sacrum tumor, choking the spinal nerve causing pain and gradual loss of ability to walk/lower body functions
Cigna Response: Refused to approve SBRT (radiosurgery) to zap the tumor, conventional surgery was out since the tumor was actually growing in the bone tissue itself and would have required pelvic reconstruction surgery, lifelong pain, all without a possibility of "getting it all out". We said no thanks, explored radiosurgery instead. I should note they apparently wanted us to go through traditional chemo and therapy despite being told endlessly by our doctors that ASPS (Alveolar Soft Part Sarcoma) is resistant to both and can actually even be aggravated by these.
Kevin also starts pazopanib, a targeted therapy drug approved for sarcoma use, we see some shrinking as evidenced by increased mobility and lessened nerve pain...BUT THERE'S STILL A 5CM TUMOR SITTING IN HIS SPINE. HEY CIGNA, WE CAN HAZ SURGERY NAO???
Cigna Response: Continues to deny SBRT treatment
July 2013 - Kevin hospitalized when pain becomes absolutely unbearable, doctors at the hospital order SBRT on the tumor after reviewing his case
Cigna Response: Denies SBRT, denies the entirety of the hospital treatment claiming SBRT could have been done as an outpatient surgery (WHICH WE TRIED TO GET BUT THEY DENIED EARLIER) Gives us an 80k bill saying that we're not responsible for services performed that were not medically necessary (I guess being admitted into a hospital for torturous pain as a result of a spinal tumor that we can't operate on because insurance is being a bunch of dickheads translates into "not medically necessary")... though I guess since he was hospitalized the onus to pay was on UCLA. Either way, dicks.
Kevin responds well to radiosurgery on sacrum, we see significant shrinkage and Kevin is able to walk with only minor discomfort now. He is on a full regimen of systemic treatments with shitty side effects, but it looks like it's keeping his lung tumors at bay. Before I have to find a lawyer, health insurance through my work (Yay Carbine, go WildStar!) kicks in and Blue Cross covers ALL of the 80k hospital stay + radiosurgery bill. Carbine health insurance > Blizzard health insurance.
Six month period of deceptive stability continues until...
March 2014 - Kevin gets a brain MRI and it's discovered he has brain tumors now. WBRT is actually approved by insurance and he's treated with it for three weeks. Loses hair, extreme fatigue, generally feels like shit. Added a second systemic treatment at this point called Afinitor (everolimus) but Kevin is unable to tolerate it. It creates angry ulcers everywhere, on his back and in his mouth. Kevin cannot even swallow water without being in pain. He drops something like 20-30 pounds before we decide the side effects are just too toxic.
June 2014 - Since the pazopanib seems to be having limited efficacy, with new brain mets having appeared, we search for other treatments. On the advice of a parent who has been battling on behalf of her daughter, who was diagnosed at age 7? 9? with this terrible disease, we had Kevin's tumor gene-sequenced. I'm hazy when exactly we did this, probably back in March, I think? Based on the results, we are strongly recommended to pursue crizotinib (Xalkor) and cabozantinib (Cometriq). But guess what, since neither are FDA approved for use in Kevin's disease, which is a super rare cancer (accounts for .01% of all cancers diagnosed in the US, comes out to maybe 200 or less patients total), insurance denies us. We ask them to make an exception. We want another PET scan to assess how effective pazopanib has been throughout the body.
Cigna Response: Cigna denies our pre-cert authorization request for the PET scan and also the drugs. Says it's medically unnecessary. We try and figure out ways to schedule alternate scans, using MRI imaging, and the loops the doctor's office has to jump through to get a single fucking scan should qualify those nurses for the Olympics. To their credit, they stayed on top of it all, communicated frequently with us, and did everything in their power (including spending hours on the phone with insurance, and with the employee rep from Activision Blizzard).
Now we are squarely in the must seek clinical trials/experimental drugs since our insurance refuses to pay for anything, but his brain mets disqualify him from a lot of things. I will be honest. I don't know if crizotinib or cabozatinib is the answer. In fact, Cigna is correct in that there is no large body of evidence that supports the efficacy in these drugs for ASPS. That being said, there are less than two hundred fucking cases of ASPS diagnosed in a year, most of which are incorrectly diagnosed as something else. Show me the researcher that goes HOT DIGGITY DAMN I can't wait to do research that will apply to .01% of cancer patients! (actually there are some, including our oncologist, but you get what I mean). A rare disease, with very little research work done specifically targeting it, by its very nature is not going to have a ton of peer-reviewed literature published about it. If they had already established an effective treatment for ASPS, wouldn't that be called a cure? This cancer has no cure, we're trying to find one, but apparently unless we're willing to fork out 14.4K for a month's supply of drugs, we have to wait for either a clinical trial or the appeals process to work itself out.
Oh, did I also mention they denied the 8k bill for gene sequencing? It's an experimental/investigational procedure. Foundation One is helping me appeal that.
So right now I have an utter loathing of Cigna, the healthcare system, and the fact that even though it's this cancer that's killing him, and not the insurance company, so many things could have been done sooner, faster, and with less stress and agony on both our parts. I am willing to bet that palliative care measures that I'd like to get for Kevin (a wheelchair, a hospital bed, oxygen tank) will be another terrific fight. It shouldn't have to be like this. A stage four cancer patient should not have to fight health insurance every step of the way to get treatment that will improve his quality of life and extend his life expectancy.
Do me a favor. Share this story. One day, this could be your story.
Devil's Advocate Section
Things Cigna has covered:
-doctor's visits, all of them, and we see a lot of different doctors frequently. Last time I counted he has five doctors he checks in with regularly
-UCLA is one of the top healthcare institutions and it's within our network. I am grateful Cigna covers them
-Many of his scans, and he needs to get them ever 3-4 months (I have no idea why some are okay and some are not)
-most of Kevin's non-targeted therapy drugs like synthetic thyroid hormone (low thyroid levels due to crazy cancer drugs), though they did cover the approved pazopanib which is a pricey drug, all his painkillers (also expensive), and other stuff
-labs
I appreciate that Cigna has covered some of the costs of Kevin's healthcare. What I fault them for is not willing to cover things that could potentially extend his life, especially as the cancer began to advance. I feel like right now they are just waiting for him to DIE.
Then Kevin's health took a nosedive in 2013, and now we're in 2014 with brain mets, lung mets, sternum mets, and the sacrum met (which appears to be mostly inert from radiosurgery performed in 2013).
This post is so people can follow a timeline of our tussles with Cigna:
July 2012 - Surgery in Germany for laser resection of lung tumors, left lung
Nov 2012 - 2nd Surgery in Germany for laser resection of lung tumors, right lung
Cigna Response: Denied, based on policy with Kevin's employer that no surgeries allowed in foreign countries, unless emergency in nature
We chose not to appeal this, after all it was clearly laid out in the handbook, so we paid roughly $70k out of our own pockets. Amazing friends promptly set up a fundraiser and replenished our thoroughly depleted coffers.
May 2013 - Discovery of 5cm sacrum tumor, choking the spinal nerve causing pain and gradual loss of ability to walk/lower body functions
Cigna Response: Refused to approve SBRT (radiosurgery) to zap the tumor, conventional surgery was out since the tumor was actually growing in the bone tissue itself and would have required pelvic reconstruction surgery, lifelong pain, all without a possibility of "getting it all out". We said no thanks, explored radiosurgery instead. I should note they apparently wanted us to go through traditional chemo and therapy despite being told endlessly by our doctors that ASPS (Alveolar Soft Part Sarcoma) is resistant to both and can actually even be aggravated by these.
Kevin also starts pazopanib, a targeted therapy drug approved for sarcoma use, we see some shrinking as evidenced by increased mobility and lessened nerve pain...BUT THERE'S STILL A 5CM TUMOR SITTING IN HIS SPINE. HEY CIGNA, WE CAN HAZ SURGERY NAO???
Cigna Response: Continues to deny SBRT treatment
July 2013 - Kevin hospitalized when pain becomes absolutely unbearable, doctors at the hospital order SBRT on the tumor after reviewing his case
Cigna Response: Denies SBRT, denies the entirety of the hospital treatment claiming SBRT could have been done as an outpatient surgery (WHICH WE TRIED TO GET BUT THEY DENIED EARLIER) Gives us an 80k bill saying that we're not responsible for services performed that were not medically necessary (I guess being admitted into a hospital for torturous pain as a result of a spinal tumor that we can't operate on because insurance is being a bunch of dickheads translates into "not medically necessary")... though I guess since he was hospitalized the onus to pay was on UCLA. Either way, dicks.
Kevin responds well to radiosurgery on sacrum, we see significant shrinkage and Kevin is able to walk with only minor discomfort now. He is on a full regimen of systemic treatments with shitty side effects, but it looks like it's keeping his lung tumors at bay. Before I have to find a lawyer, health insurance through my work (Yay Carbine, go WildStar!) kicks in and Blue Cross covers ALL of the 80k hospital stay + radiosurgery bill. Carbine health insurance > Blizzard health insurance.
Six month period of deceptive stability continues until...
March 2014 - Kevin gets a brain MRI and it's discovered he has brain tumors now. WBRT is actually approved by insurance and he's treated with it for three weeks. Loses hair, extreme fatigue, generally feels like shit. Added a second systemic treatment at this point called Afinitor (everolimus) but Kevin is unable to tolerate it. It creates angry ulcers everywhere, on his back and in his mouth. Kevin cannot even swallow water without being in pain. He drops something like 20-30 pounds before we decide the side effects are just too toxic.
June 2014 - Since the pazopanib seems to be having limited efficacy, with new brain mets having appeared, we search for other treatments. On the advice of a parent who has been battling on behalf of her daughter, who was diagnosed at age 7? 9? with this terrible disease, we had Kevin's tumor gene-sequenced. I'm hazy when exactly we did this, probably back in March, I think? Based on the results, we are strongly recommended to pursue crizotinib (Xalkor) and cabozantinib (Cometriq). But guess what, since neither are FDA approved for use in Kevin's disease, which is a super rare cancer (accounts for .01% of all cancers diagnosed in the US, comes out to maybe 200 or less patients total), insurance denies us. We ask them to make an exception. We want another PET scan to assess how effective pazopanib has been throughout the body.
Cigna Response: Cigna denies our pre-cert authorization request for the PET scan and also the drugs. Says it's medically unnecessary. We try and figure out ways to schedule alternate scans, using MRI imaging, and the loops the doctor's office has to jump through to get a single fucking scan should qualify those nurses for the Olympics. To their credit, they stayed on top of it all, communicated frequently with us, and did everything in their power (including spending hours on the phone with insurance, and with the employee rep from Activision Blizzard).
Now we are squarely in the must seek clinical trials/experimental drugs since our insurance refuses to pay for anything, but his brain mets disqualify him from a lot of things. I will be honest. I don't know if crizotinib or cabozatinib is the answer. In fact, Cigna is correct in that there is no large body of evidence that supports the efficacy in these drugs for ASPS. That being said, there are less than two hundred fucking cases of ASPS diagnosed in a year, most of which are incorrectly diagnosed as something else. Show me the researcher that goes HOT DIGGITY DAMN I can't wait to do research that will apply to .01% of cancer patients! (actually there are some, including our oncologist, but you get what I mean). A rare disease, with very little research work done specifically targeting it, by its very nature is not going to have a ton of peer-reviewed literature published about it. If they had already established an effective treatment for ASPS, wouldn't that be called a cure? This cancer has no cure, we're trying to find one, but apparently unless we're willing to fork out 14.4K for a month's supply of drugs, we have to wait for either a clinical trial or the appeals process to work itself out.
Oh, did I also mention they denied the 8k bill for gene sequencing? It's an experimental/investigational procedure. Foundation One is helping me appeal that.
So right now I have an utter loathing of Cigna, the healthcare system, and the fact that even though it's this cancer that's killing him, and not the insurance company, so many things could have been done sooner, faster, and with less stress and agony on both our parts. I am willing to bet that palliative care measures that I'd like to get for Kevin (a wheelchair, a hospital bed, oxygen tank) will be another terrific fight. It shouldn't have to be like this. A stage four cancer patient should not have to fight health insurance every step of the way to get treatment that will improve his quality of life and extend his life expectancy.
Do me a favor. Share this story. One day, this could be your story.
Devil's Advocate Section
Things Cigna has covered:
-doctor's visits, all of them, and we see a lot of different doctors frequently. Last time I counted he has five doctors he checks in with regularly
-UCLA is one of the top healthcare institutions and it's within our network. I am grateful Cigna covers them
-Many of his scans, and he needs to get them ever 3-4 months (I have no idea why some are okay and some are not)
-most of Kevin's non-targeted therapy drugs like synthetic thyroid hormone (low thyroid levels due to crazy cancer drugs), though they did cover the approved pazopanib which is a pricey drug, all his painkillers (also expensive), and other stuff
-labs
I appreciate that Cigna has covered some of the costs of Kevin's healthcare. What I fault them for is not willing to cover things that could potentially extend his life, especially as the cancer began to advance. I feel like right now they are just waiting for him to DIE.
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