Fracking Healthnet
So, my insurance has declined to pay for my next round of care. See, I'm now taking chemotherapy every four weeks (with concurrent bloodwork), and every eight weeks, I get an MRI to demonstrate that the cancer is at least not growing. If it were shown to be growing, we would stop the chemotherapy immediately and start a new type of treatment. The chemotherapy is given as part of a clinical trial, because the medication was approved for high-grade tumors, but my growth is low-grade. My insurance does not want to pay for my next MRI, which is due on December 25 or so. Merry Christmas my ass, Heathnet.
The insurance is declining to pay for an MRI because 1. Healthnet has paid for a helluva lot of expensive care for me in the last year (that's not the stated reason, but let's be real) and 2. Healthnet states that it does not pay for care in a clinical trial that is over and above the standard of care. What is the standard of care for someone with recurrent infiltrative Oligodendroglioma/Astrocytoma which has spread through both frontal lobes, you ask? Good question, dear thoughtful reader. The cancer that I have is not that common (in case you were thinking it was) and since any given physician sees very few cases of this, there is not a well-established national standard of care for this. I am so very lucky to be getting care at UCSF, an international leader in treatment of brain cancer where this chemotherapy which I am taking is the standard of care for what I have. If I weren't getting care here, I would have probably had radiation therapy on a huge area of my brain by now. What difference does it make, you ask? Well, I work five days a week and every eight weeks, I miss a day or two of work to get an MRI and to visit with my neuro-oncologist at UCSF. I have little to no side-effects of the chemotherapy, which happens to be shrinking the cancer growth, by the way. Had I gotten radiation, I would have missed work entirely for about six weeks, and I would have likely had significant side-effects including memory loss and permanent hair loss. I would probably have needed a family member to stay with me for the duration to help me make my appointments and to otherwise keep an eye on me. I would have increased risk for long-term side effects such as other cancers. I don't know if my ability to do my job, which requires me to be intellectually and emotionally very present and together, would be affected, even after the radiation were finished.
So, despite the fact that my doctor's office submitted the forms and written letters in a timely manner, Healthnet states that it is just now getting around to evaluating the arguments, and its evaluation will take a month. The MRI is due next week, remember?
Can I remind you that this is *cancer* that we're dealing with here? I know that it's going to ultimately kill me, but the timeliness of my treatments means real time for my life. Longer life, longer functional life, longer life during which I can communicate and understand others' communication. (The language center of my brain is close to the affected area.) Longer life means more time that I might have the chance to mother a child, should I choose to do so. If the MRI is later, the next cycle of chemotherapy is later, and therefore the cancer cells have more time to grow.
Okay, so I'm very lucky. UCSF has offered me a free MRI. Yeah, UCSF. I'm sure that they're doing it at least in part because I'm participating in their clinical trial. In any case, yeah. It's scheduled for January 9, which is two weeks later than it should be, but okay, I'll take it. Here's the problem: I am a big person, with a significant case of claustrophobia. Normally I get my MRI's in an open MRI machine, after taking a big dose of Ativan. The UCSF MRI machine is not an open machine. It's small and round and will cause me to have to squeeze my shoulders together to fit. When I've had MRI's on those types of machines in the past, I needed IV sedation with a drug related to Ativan but much stronger, called Versed. Since my insurance has not approved the MRI, of course they have not approved IV sedation.
I really, really hope that I can tolerate that MRI. The fear that I have in regards to the closed MRI machine is close to terror. More than anything, though, I am furious with Healthnet for declining the standard health care of someone with cancer growing in her head.
The insurance is declining to pay for an MRI because 1. Healthnet has paid for a helluva lot of expensive care for me in the last year (that's not the stated reason, but let's be real) and 2. Healthnet states that it does not pay for care in a clinical trial that is over and above the standard of care. What is the standard of care for someone with recurrent infiltrative Oligodendroglioma/Astrocytoma which has spread through both frontal lobes, you ask? Good question, dear thoughtful reader. The cancer that I have is not that common (in case you were thinking it was) and since any given physician sees very few cases of this, there is not a well-established national standard of care for this. I am so very lucky to be getting care at UCSF, an international leader in treatment of brain cancer where this chemotherapy which I am taking is the standard of care for what I have. If I weren't getting care here, I would have probably had radiation therapy on a huge area of my brain by now. What difference does it make, you ask? Well, I work five days a week and every eight weeks, I miss a day or two of work to get an MRI and to visit with my neuro-oncologist at UCSF. I have little to no side-effects of the chemotherapy, which happens to be shrinking the cancer growth, by the way. Had I gotten radiation, I would have missed work entirely for about six weeks, and I would have likely had significant side-effects including memory loss and permanent hair loss. I would probably have needed a family member to stay with me for the duration to help me make my appointments and to otherwise keep an eye on me. I would have increased risk for long-term side effects such as other cancers. I don't know if my ability to do my job, which requires me to be intellectually and emotionally very present and together, would be affected, even after the radiation were finished.
So, despite the fact that my doctor's office submitted the forms and written letters in a timely manner, Healthnet states that it is just now getting around to evaluating the arguments, and its evaluation will take a month. The MRI is due next week, remember?
Can I remind you that this is *cancer* that we're dealing with here? I know that it's going to ultimately kill me, but the timeliness of my treatments means real time for my life. Longer life, longer functional life, longer life during which I can communicate and understand others' communication. (The language center of my brain is close to the affected area.) Longer life means more time that I might have the chance to mother a child, should I choose to do so. If the MRI is later, the next cycle of chemotherapy is later, and therefore the cancer cells have more time to grow.
Okay, so I'm very lucky. UCSF has offered me a free MRI. Yeah, UCSF. I'm sure that they're doing it at least in part because I'm participating in their clinical trial. In any case, yeah. It's scheduled for January 9, which is two weeks later than it should be, but okay, I'll take it. Here's the problem: I am a big person, with a significant case of claustrophobia. Normally I get my MRI's in an open MRI machine, after taking a big dose of Ativan. The UCSF MRI machine is not an open machine. It's small and round and will cause me to have to squeeze my shoulders together to fit. When I've had MRI's on those types of machines in the past, I needed IV sedation with a drug related to Ativan but much stronger, called Versed. Since my insurance has not approved the MRI, of course they have not approved IV sedation.
I really, really hope that I can tolerate that MRI. The fear that I have in regards to the closed MRI machine is close to terror. More than anything, though, I am furious with Healthnet for declining the standard health care of someone with cancer growing in her head.