Radicalized

A short story about health care, and desperation.

Just because you’ve decided to die of cancer, that doesn’t stop everyone you know from consuming your last months on this Earth by sending you links to miracle cures. They deleted these and politely told everyone—even their parents—to cut that shit out, but people can’t help themselves.

Lacey’s mom found the link to adoptive cell transfer therapy.

It wasn’t woo: the US National Cancer Institute was part of the NIH, and they had gotten multiple papers on the therapy published in Nature, with huge numbers of citations. Joe and Lacey read the papers as best as they could, and Lacey talked about them with her dying Facebook friends, and they all decided that maybe this was worth a shot.

The way it worked was, they sequenced the genome of your tumor and looked for traits that your own white blood cells could target, then they sorted out your own white blood cells until they found some that targeted those traits, and grew 100 billion or so of those little soldiers in a lab and injected them into you. It was just a way of speeding up the slow and inefficient process by which your own body tuned its own white blood cell population, giving it a computational boost that could outrace even the fastest-mutating tumor.

Joe and Lacey even found a private doc, right there in Phoenix, who’d do the procedure. He had an appointment at Arizona State University, had published some good papers on the procedure himself, and all he needed was $1.5 million from their health insurer.

You know what happened next. Their insurer told Lacey that it was time for her to die now. If she wanted chemo and radiation and whatever, they’d pay it (reluctantly, and with great bureaucratic intransigence), but “experimental” therapies were not covered. Which, you know, OK, who wants to spend $1.5 mil on some charlatan’s miracle-cure juice cleanse or crystal therapy? But adaptive cell transfer wasn’t crystal healing and the NIH wasn’t the local shaman.

They underwent—Joe underwent—a weird transformation after her last call with the supervisor’s supervisor’s supervisor at their health insurer. Lacey had been so good about it all, finding peace and calm and determining to make her death a good death. She’d dragged Joe out of his anger at cancer and back into his love of her and a mutual understanding that they’d make their last days together good ones, for them and for Madison.

But after the insurer turned them down, the rage came back. Maybe the therapy wouldn’t have worked, but it was a chance, and a realistic one, not a desperate one, a real possibility that his daughter would have a mother and that he would have a wife and best friend to grow old with. (...)

There are lots of support forums online and the best ones perform an incredible, nearly magical service for their participants, proving the aphorism that “shared pain is lessened, shared joy is increased,” and making the lives of everyone who contributes to them better.

Fuck Cancer Right In Its Fucking Face was not one of those forums.

Fuck Cancer Right In Its Fucking Face was a forum for very angry people whose loved ones were dying or dead. Some of the denizens of FCRIIFF got better, maybe even partially due to the chance to vent in the forums, but also because they were surrounded by people who loved them and brought them back from the brink, people who shared their grief but had better coping skills.

In a forum for ex-drunks, there’s a big group of elder statespeople who’ve been sober for years and years. They’re a wise, moderating voice, and they are the existence of proof of life after addiction. Whenever someone on the forums went on a bender and was recriminating with themselves, there was a dried-out elder who could tell a story to top theirs, about being put out on the street, losing their kids, losing their limbs, even, and coming back from it.

Fuck Cancer Right In Its Fucking Face did not have those people. The people who got over their furious grief left FCRIIFF, chased away by its rage culture. The people who stayed were really into their anger, clinging to it like a drunk refusing to let go of a bottle.

If your anger took you to a place you couldn’t handle, a place that scared you, the elders of FCRIIFF would help you all right: they’d explain to you that this was the right reaction, the only reaction, and it was never, ever going to get better. This was your life from here on in. (...)

He stayed on the forum.

He was ready to quit FCRIFF—which old-timers like him called Fuckriff, or Ruck Fiff when they wanted to sound polite—when LisasDad1990 joined. His first message:

Lisa is six years old. This is what she looks like. I have put her to bed every night since she stopped breast feeding. I used to read her Hand, Hand, Fingers, Thumb and then we graduated to Green Eggs and now we’re reading Harry Potter. That’s right, a six-year-old. She’s SMART.

Last year, Lisa started falling down a lot, bumping into things. Her teachers said she wasn’t concentrating in school and I saw it too. Her mom’s not in the picture. I took her to the doc’s and they said she had a brain tumor. I can go into details later, but it’s not a good brain tumor. It’s not little or cute. It’s an aggressive little fucker, and it’s growing.

Lisa can only see out of one eye now, and she walks with a walker, or I wheel her in her chair.

But the good news is that it’s treatable. Not like 100% but the oncologist says he can whack that bastard straight out of there and blast her with some rads and give her some poison and she’ll live. She’ll always have some problems, but she’s young and she’s full of life and she’ll figure that shit out.

But our insurance? Not so much. I was working for a customs broker when it hit, my first real full time job, with insurance and everything. Paid so much into that insurance.

SO MUCH. But they say that the kind of surgery the doc wants to do, it’s experimental. They say it’s not covered.

Guys, I’m 28 years old, a single dad. My parents haven’t given me a dime since I told them to go fuck themselves and moved out at 17. If my ex had a dollar to spare, it’d go to oxys, before the student-debt collectors could get it.

I have a GoFundMe, but that only works if you know a million people or one millionaire. My kid is the greatest thing in the world, but everyone thinks that about their kid, and from all the evidence so far, I’m the only one who can see it.

The thing is, my daughter Lisa is going to die.

I mean, I can kid myself about it, but that’s what it’s about. My six-year-old kid is going to die even though she doesn’t have to (or at least she has a chance she won’t get to take).

It’s because some random asshole earning half a million dollars in an office at the top of a tower full of random assholes earning less than me decided she should die. He doesn’t know her and he won’t ever know her but he knows that there are so many kids like Lisa that are going to die because of his choices.

I’ve been sad, I’ve been angry, I’ve been worried. I hold Lisa so much that she tells me, dad stop it, but some day I’m going to hold her and she won’t say anything because she’ll be dead. That’s my truth and my life and I live that truth every day.

When Lisa goes, I’m going to go too. I never said that out loud but I’ll write it here because you guys know what I’m going through. I’m dead fucking serious. With Lisa I had everything to live for. Now I got nothing. Can’t even afford to bury her, not after all the out of pockets. Red bills every day, every credit card wants to send a guy around with a bat to break my knees. Maybe I’ll buy a gun and shoot the first one that comes to the door, then stick it in my mouth…

by Cory Doctorow, The American Prospect |  Read more:

Image: Cory Doctorow. Gregory Katsoulis/Creative Commons

[ed. Readers will recall how we ended up with Obamacare: typical bait and switch. Republicans and insurance industry lobbyists drew a red line on Medicare For All/Single Payer Healthcare, refusing to even negotiate a national healthcare system unless those options were off the table (and citizens were required to sign up through private insurance companies). They then proceeded to vote against the compromise anyway (and have been trying to kill it ever since). See also: Cory Doctorow’s prescient novella about health insurance and murder: ‘They’re going to be afraid’ (The Guardian); and, How AARP Shills for UnitedHealthcare (TAP):]

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I had assumed that UnitedHealth’s business model was to lowball premiums and then more than make up the profit by denying claims. But it’s even worse than that.

In Massachusetts, where I live, a supplemental Medicare policy from UnitedHealth costs $251 a month. An identical policy from Blue Cross, which has the state’s best record in not denying care, costs $212.

Why on earth would consumers buy such a flawed insurance product? It helps if they are captive customers, steered to UnitedHealth by a trusted source.

That would be AARP.

AARP has just under 38 million members. But AARP is basically an insurance marketing scheme masquerading as an advocacy group for the elderly.

For 27 years, UnitedHealth has been the co-branded choice of AARP. If you are looking for a supplemental policy to conventional Medicare, or a Medicare Advantage product, or a Medicare drug insurance policy, AARP will steer you to UnitedHealth. And only to UnitedHealth.

The reason is shameful. UnitedHealth kicks back 4.95 percent of premium income from AARP subscribers to AARP. And the numbers are staggering. According to AARP’s audited financial report, AARP made $289.3 million from member dues, but $1.134 billion from kickbacks from insurers, of which the lion’s share, $905 million, was from health insurers. AARP delicately refers to these as royalties.

And somehow, because it is a nonprofit, AARP manages to avoid income taxes on this kickback income. Despite Congress’s efforts over the years to make nonprofits pay taxes on commercial income, AARP paid only about $3 million in federal income taxes on “royalties” of well over a billion. ~ How AARP Shills for UnitedHealthcare

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Medicare For All/Single Payer Healthcare:

A February 2020 study published in The Lancet found that the proposed Medicare for All Act would save 68,000 lives and $450 billion in national healthcare expenditure annually. According to a 2022 study published in the Proceedings of the National Academy of Sciences of the United States of America, a single payer universal healthcare system would have saved 212,000 lives and averted over $100 billion in medical costs during the COVID-19 pandemic in the United States in 2020 alone. Roughly 16% of all COVID-19 deaths occurred in the US, despite having only 4% of the world's population.  ~ Wikipedia