Tag Archives: health insurance

Tamoxifen & pelvic pain

I’ve been in pain for days and days. Google served up this breastcancer.org dicussion thread on Tamoxifen & Pelvic Pain & Pressure. Terrified of endometrial thickening, ovarian cysts, uterine fibroids. And cancer of course.

Won’t be scheduling any more trips to the gynecologist any time soon, however–not even Pap Redux–having been served out of the blue with an OB/GYN bill for $230. I’m on medical assistance and my co-pay at the time of appointment was $1. I don’t know where the bill came from all of a sudden; what is itemized on it is “additional diagnosis.”

And I still don’t know what it is I’ve been diagnosed with.

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Genetic testing in squares, circles, and small unmarked bills

I met with the genetic counselor yesterday–which had me imagining she would sit my DNA down in an upholstered chair, a box of tissues beside it, and try to coax it to talk about its childhood while she sat nodding, notebook on knee.

I mean, just look at this chick’s anemic little gene. She needs to eat some spinach, or something, and punch those carcinogens in the face.

Conjunction junction, what’s yr fun-ction?

Instead she talked about the BRCA mutation and Li-Fraumeni syndrome — which I had never heard of before (I thought she was saying ‘Leefah Ramini syndrome’), and which sucks a big one, holy shit; I kind of wish I didn’t know that things like this exist.

She drew up a chart of my family history, which looks like this, wherein the squares are men, the circles women, the black dots cancer and the X’s deaths. Some from cancer, others from heart disease and suicide and drug overdoses long before cancer could have caught up with them. In short, I don’t know much about my family. I only knew one of my grandparents, and barely; the others didn’t survive out of their forties. My longest-living  relatives were/are in their early 60s.

Also, there are mainly squares in there, so as far as breast and ovarian cancer goes, it’s hard to say.

Still, it’s strange to see people reduced to a geometrical map, crossed out with a callous pencil scratch, black dots like small deaths. I sat thinking of Mendel’s pea plants and the genetic traits surveys we did in eighth grade (when I discovered I have one bent thumb and one straight; even then I knew I was a freak), wondering what genetic death wish sat inside me.

Here’s a big surprise: my ‘insurance’ doesn’t cover the three thousand dollar test.

Three. Thousand. Dollars.

But here’s a big surprise, without a trace of sarcasm: the good people of UPMC are picking up the tab with research grant money. To express my gratitude, I let them take five additional vials of blood and peed in a cup for them.

The results–which have a 7% chance of coming back “indeterminate”–come in three weeks. My blood’s being sent out to Utah as we speak. There is only one lab in the country that performs these tests, she told me, because they have a patent on the genes.

A patent on the genes. BRCAnalysis®.

Yeah, I did a Scooby-Doo double when she said that. Arrrrr?

I’m not the only one who consideres this “illegal and unconstitutional,” as the ACLU has taken them to court over it.

According to the lawsuit, Myriad’s “monopolistic control” over its BRCA genes hampers clinical diagnosis, serves as a disincentive for research, and allows the company to charge upwards of $3,000 for testing that many women cannot afford. As a result of these practices, “patients whose tests come back with inconclusive results do not have the option to seek additional testing elsewhere,” the ACLU charges.

You think?

No matter what the results are, right now they’re solely for my own information. I’m keeping my left breast and my ovaries, and all the other bits, for the time being. Maybe that seems like I don’t set my life at a pin’s fee. Maybe I don’t, really. All I know is, I need to catch my breath.*

*When I first typed that, I wrote, “I need to catch my breast.”

Dear God. Maybe I need the upholstered chair and tissue box after all.

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This is Wendy. Wendy believes in social justice.

As the healthcare debate descends further into absurdity–

I decided to write my own version of Rep. John Shadegg’s address on Capitol Hill.

Emily, an uninsured cancer patient from the great state of Pennsylvania,

and her kitten.

emily-wendy

This is Wendy.

Wendy believes in social justice.

Wendy likes America because we have social justice here, and Wendy believes in universal healthcare.

She asked to come here today to say she doesn’t want the insurance companies to deny her healthcare; she wants to be able to have access to treatment regardless of her financial status or pre-existing conditions.

You see, Wendy knows that if this bill doesn’t pass, it says that her mom continues to be without coverage for cancer.

 As a matter of fact, if the bill doesn’t pass, then her mom still won’t have coverage in five years, and if she has a recurrence, she may have to face the costs of chemotherapy without the nationalized healthcare protection she received in England.

Wendy wants patient care. Wendy doesn’t want her mom to be forever denied health insurance because she was diagnosed with cancer at the age of twenty-four; Wendy doesn’t want her mom to die because she can’t afford treatment, do you, Wendy? That’s a cruel and consumer-driven perversion of what should be a government’s obligation to its people!

Wendy doesn’t want a capitalist social Darwinist healthcare system. She wants America’s healthcare insurance companies to stop scaremongering at the expense of people’s lives.

She believes in the right to healthcare.

But most of all, Wendy says, don’t deny healthcare to those whom you guys feel undeserving and undesirable. If you want health insurance, well,

that’s what a government is there for.

Because it’s not fair to deny medical treatment to me,

or to anyone.

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On Being Young & Uninsured in America

220 to 215.

I tire of watching American television not just because it’s all commercials, but because as far as advertising goes, the commodification of  healthcare seems to beat out Christmas toys 2 to 1. America can commercialize the birth of Baby Jesus til the four horsemen of the apocalypse come crashing past Santa’s sleigh, and I won’t bat an eyelid. But every time some silken voice suggests I ask my doctor whether Zoloft or Lipitor or Enablex or Viagra is right for me, I want to scream. 

What is wrong with this country?

Whenever  Alex Trebek gives pause, we’re bombarded by video of forlorn-looking people who live mired in pain and shame over their illnesses. Overactive bladder. Erectile dysfunction. Manic depression. Fibromyalgia. Then they ask their doctor…and the miracle medication with a Star Trek name propels them into a world of color, a world of horse-riding, soap-bubble-blowing, small-children-tickling. They smile distractedly at the screen while an in-the-event-of-emergency voice, a required-safety-instructions voice, informs us of the possible side effects, something that can never be done in a single breath. In extreme and rare cases, it most always causes death.

I don’t want to be diagnosed by the television. I don’t want to ask my doctor about it either. If I’m in need of medication, I want a doctor to tell me so, not a drug company. Because that’s a doctor’s job.

Worse are the insurance commercials, the ones with radiant-skinned nuclear families and the Blue Cross  that promises their protection.

As if it’s entirely reasonable that your health is something else to shop for.

In the meantime, a health care reform plan squeaks through the House at 220 votes to 215.

Democrats say the House measure — paid for through new fees and taxes, along with cuts in Medicare — would extend coverage to 36 million people now without insurance while creating a government health insurance program. It would end insurance company practices like not covering pre-existing conditions or dropping people when they become ill. (New York Times)

I’m continually baffled that members of a largely civilized and educated democratic republic do not feel that their government should be at all responsible for their wellbeing. And that the state has made people so fearful of government intervention that its citizens even actively resist measures designed for their own protection. Their government-instilled fear of government itself allows the state to evade any moral obligation to its people. It’s one of the greatest ploys in American political history.

In that respect, I don’t fear government as much as I fear what we’d do to one another without it.

And I feel about as much stigma at being called a socialist as I would at being called queer or a feminist.

As in, I couldn’t have put it any better myself.

I understand the American attitude toward hard work and self-reliance and a sense of entitlement, I do. America teaches you that, ye ole rags to riches. But what I cannot begin to fathom is the active resentment of the have-nots, the absolute refusal to even consider anyone else’s needs but your own.

Because another thing America should teach you is how quickly you can go from riches to rags.

Especially as far as insurance is concerned. My situation in not anomalous to the American experience. I didn’t end up uninsured because I’m a degenerate who’s never contributed to society. I ended up uninsured because I’m sick.

I was supposed to have a full healthcare package along with my teaching assistantship from the University of Michigan. But because I got cancer, I couldn’t go to Michigan, and ended up without the healthcare.  

So coming out of the NHS and into the never land of the American healthcare nightmare has me perpetually on edge. I’m what I was always afraid I would be: young and uninsured in America (because I don’t consider being on Medicaid being ‘insured’ any more than living in a shelter would convince me I weren’t homeless). And I’m what I never even dreamed I would be: young and uninsured and a cancer patient. Scheduling the appointment for my CT scan in Pittsburgh had me in tears with the receptionist. Because the primary concern at any American hospital is not what’s medically necessary, but what your insurance covers. Or rather, doesn’t.

“I don’t understand why you’re giving me a hard time,” I said to her.

But I do. I do understand why. It’s the system we live in. It’s not her fault–but the problem isn’t that it’s someone’s fault, but that it sometimes appears to be no one’s concern.

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