Rant Against the Machine
” Whenever an
doctor [insurance company] cannot do good, he [they] must be kept from doing harm.” – Hippocrates (mostly)
“We gotta take the power back” – Rage Against the Machine
Ana’s latest Manga drawing – done on her iPad
As we move into next week and people gear up to vote, I find that I’m battling a certain level of ambivalence about the election. Voting makes me feel good – “look ma, I voted!” but it’s not really a political statement. It won’t move mountains. It didn’t prevent me from getting caught up in the train wreck that passes for healthcare in this country.
In fact, nothing in my life has prepared me for the complexity and irrationality of America’s healthcare system. Is this progress? If a doctor that can save my child is not covered by my health insurance plan, does that doctor actually exist? Not for me. Not for my child.
If a tree falls in a forest…
Ana’s cancer has brought me to my knees before the healthcare system. I am overwhelmed by the enormity of red tape and procedural bullshit that stands between Ana, her doctors, Jim and I.
It”s almost impossible to navigate this chaos with any sort of linear logic.
For example, during the first week that Ana was hospitalized I called CDPHP to confirm that Westchester Medical was a covered hospital. I also asked about cancer treatment and I specifically asked if a liver transplant was covered. The CDPHP rep said that everything was covered once we met our deductible even a transplant. I know they recorded this call because another rep (the one who told me that the transplant was denied at Westchester) admitted that the recording had been listened to “multiple times.”
We were notified by a social worker on the transplant team that Westchester was not a covered facility for liver transplant when Ana was down to 62 pounds, critically ill and about to be put on the transplant list. At that point CDPHP had taken it upon themselves to try and have her transferred to one of their covered facilities (a “center of excellence.”)
I appealed the decision twice, and was denied twice. Ironically, we don’t want Ana to get a liver transplant. We want to save her liver which is why we’ve gotten second opinions from surgeons at Sloan and Columbia – BUT THAT’S NOT THE FREAKING POINT. The surgeon at Westchester is supposedly renowned for doing liver transplants on children. He invented a procedure that makes liver transplantation much safer than it was 20 years ago. If she needs a transplant, he’s who we’d like her to go to. If the tumor can be resected, we’d like her to go to the guy at Sloan. If her tumor can be saved via ex vivo resection with minimal risk to her survival, we’d like her to go to Columbia. But of course we need CDPHP’s permission for any of these options and they’ve already denied us the guy at Westchester.
CDPHP was going to transfer Ana to an in-network transplant team not because that’s what her doctors thought was best for her, or because we wanted to move her there, but because that’s what CDPHP was contractually obligated to do. And that is just complete horseshit.
How is anyone supposed to make informed, rational decisions about treatment when there’s no way to know what procedure will be approved where? That question was rhetorical, of course.
I used to think the answer was to remove the insurance companies completely. Go to a fee-for-service system. Sliding scale. Health co-op. This may work for routine stuff – preventative care, routine sick visits, allergies…but not when you get sick. I mean, really really sick. Suddenly the cost of just about everything soars above the reach of just about everyone. Anti-rejection medication can cost $50,000/year. Some chemotherapy drugs can cost $10,000 for one month of treatment. Then there’s surgery.
I am entirely at CDPHP’s mercy even though I pay my premium on time every month (and have been doing so for years). They have the market entirely cornered. But this isn’t Walmart or Target. I don’t have a choice here. I have to buy health insurance and I have to pay for drugs and treatment for my child. So, I’m sort of screwed. We all are.
I don’t know the answer. I don’t know how we can fix this problem. Sometimes I wonder if it’s even fixable. I will do anything – pay anything – to save Ana’s life. I am conscious that there’s an entire industry which feeds on this desperation, both intentionally and unintentionally. It begs some very fundamental questions. Why do doctors become doctors? Does everyone deserve the best care available? Is it a human right? Is it luck of the draw? Should I have planned better?
Is a civilization really civil if we can’t figure out a way to take care of each other when we’re sick?