On Cost and Cancer in America

By Xeni Jardin


Photo, by Miles O'Brien: my chemo drip from last week.

Using Storify (hey, for the first time!) I rounded up a Twitter conversation with followers about the financial devastation that can follow a cancer diagnosis in the US. Treatment here is expensive. Even the relatively fortunate who have jobs and health insurance can be crushed by medical debt. Many weighed in with personal stories of losing their homes, or having to choose between treatment or food.

Read here: "On Cost and Cancer in America."

Related reading at Boing Boing: "When life hands you cancer, make cancer-ade."

Filmmaker Michael Moore (Sicko) links to and adds to the conversation here.


On Cost and Cancer in America

A Twitter conversation on the financial devastation that often follows a cancer diagnosis in the US, where treatment is expensive—and even those fortunate to have jobs and health insurance can be crushed by medical debt.

Storified by Xeni Jardin · Wed, Apr 18 2012 23:16:59

Skimming headlines yesterday, I read a "feel-good" cancer news item making the rounds about a 6-year-old boy in Texas who helped his father pay for cancer treatment by opening a lemonade stand. 
When life hands you cancer, make cancer-ade: via lemonade stand, 6yo boy raises $10K for dad's chemoA story making the rounds this week : Drew Cox, a 6 year old boy in Texas, " decided to sell lemonade to help his father with medical bil...
Downright Dickensian.
This should make America feel shame, not feel good: 6yo boy raises $10K via lemonade stand to pay for dad's chemo. http://on.msnbc.com/I4h2USXeni Jardin
Responses flowed in from cancer survivors who have personally experienced the injustice of cancer costs in America.
@chemobrainfog @xeni That's not really that much chemo, either -- 10K worth? People don't know how much cancer costs. LOT$$$$!!!!Mary Valle
She's right. Depending on the provider, the drug, and the patient's insurance coverage, $10K might even buy you just one chemo infusion. Or half of one. And chemotherapy typically requires a lot more than one infusion. 

Helen Walters points out that the issue has broad cultural impact, too:
@xeni one of the biggest impediments to American innovation is that people stay in jobs they hate because of fear of no medical insuranceHelen Walters
A number of my followers shared their personal stories linking job struggles and cancer struggles.  For many, insurance is inextricably linked with employment. And employment in America is anything but secure.
@xeni as a oral cancer survivor, every career move is first based on insurance. Everything else is now secondary.JT Perry
@xeni I have never been w/o insurance, have had well paying jobs my entire career yet may never fully pay for my lung transplant.D. Davenport, CFRE
@xeni my mom couldnt take leave from work so my dad could have medical coverage and chemotherapy. He died the night before her birthday.Zelda Fitzgerald
@xeni dad just diagnosed. No insurance, no job. Scary as hell.Kyle Glanville
@marykvalle @chemobrainfog @xeni My wife's mastectomy was over $102K. Each chemo is $3K or so. Without insurance, we'd be bankrupt.Bob R Kenyon
@xeni It's been almost five years since my surgery and radiation treatment and I am still getting bills. It is literally never ending.HowardSol
@xeni @cwoodfield The day I lose coverage and it comes back is the day I walk in front of a bus...kitzey
Your home or your life. Choose one.
@xeni after my fiance's diagnosis, we ended up losing our house and are now in bankruptcy. And we had "good" insurance!Ms. Mary MAC
@xeni Our friend @uxmike & his young family lost their home before he was taken by cancer. Am Canadian, was sickened that they had to chooseLynne Polischuik
Here are my wrists, a few days ago. When I walked in to the chemo clinic, before they hooked me up to my drip I was presented with a bill for more than a thousand dollars: my out-of-pocket, after insurance. I get a bill every two weeks, each time I go in for an infusion.
Hope. (photo: @milesobrien) http://pic.twitter.com/lfBETHd2Xeni Jardin
I joke to my friends that I wear the wrist-band because I "HOPE" I can figure out how to cover all of the costs of my treatment—and the drugs needed to deal with the side effects of that treatment. 
As a fellow traveler told me: if the cancer don't kill you, the treatment bills will. It's been devastating for me already & I'm insured.Xeni Jardin
Chemo-nomics. Here's $500 worth of a drug that works, 3 doses, vs $100 or less of medical cannabis, many many doses. http://instagr.am/p/HZLJ8FSeBE/Xeni Jardin
It's really hard on older Americans, at or past retirement age.
@xeni @RobinDeVoh Also, your 72yr old ailing dad shouldn't have to keep working FT to make sure your 71yr old mom w/cancer gets proper care.Kristin Block
The current election-year political debate over socialized medicine in America is full of ironies.
@xeni at work today, a guy was bitching about "Obamacare" later he mentioned that our current insurance denies him a lifesaving procedureMichael Phillips
@xeni @RobinDeVoh never met anyone who had been through cancer bills that was against universal hc. Including die-hard republicans.fredtrotter
Amen. “@RobinDeVoh: @xeni Trying to beat cancer shouldn't bankrupt you. I still can't wrap my head around hate toward universal health care”Xeni Jardin
It just sucks.
Preach. “@cwoodfield: How is it that doctors telling you ‘your money or your life’ is any different from a street mugger saying same thing?”Xeni Jardin
For cancer patients whose treatment succeeds, sometimes debt lasts longer than "disease-free."
@xeni It took my parents almost 20 years to pay for my mother's treatment. Just in time for her starting treatment again.Chris Tacy
One cancer veteran put it simply:
@xeni my friend had a rare cancer and insurance. The in-network docs had no experience so she went out of network. $200K on credit cardsChemoBabe
@xeni we are all just a layoff + illness away from bankruptcy. There is no safety net.ChemoBabe
Another woman with breast cancer shared her story of double-whammy debt: what happens when two partners are both diagnosed?
@xeni my husband had thyroid cancer, same time as my bc last year, our mailbox is filled with bills daily. at least we're alive!Jennifer Fader
22 year old Kim Parker of Virginia is unemployed, and has no health insurance. 
@xeni I was diagnosed, went through surgery and treatment without health insurance. My definition of fun?Kim Parker
Uninsured cancer patient in VA. No safety net. →“@kimlopark: All went to collections and for now I have given up paying them. Im just 22.”Xeni Jardin
Uninsured cancer patient→“@kimlopark: @xeni Until I can get a better job then I will try to pay them. For now, stashing bills in a drawer.”Xeni Jardin
It's enough to make you want to move to... Canada.
Attn: Canadians—I'm available for matrimony/free Socialist chemo. “@ircri: those are the kinds of stories that keep me in Canada.”Xeni Jardin
@xeni my first drs appt after moving to Canada I tried to pay. They told me to have a nice day. I sat in the parking lot and wept.Ami McKay
@xeni My partner was offered a great job in the US last year; we didn't take it because the health care situation scares us too much!MJS
Or the UK.
@xeni healthcare systems I've experienced and worked in (Ireland/UK) have probs, but lifesaving treatment is available to all, no bankruptcyMary O'Leary
Or Thailand.
@xeni I am in Thailand for treatment. It is still very expensive, but I can mostly afford it. Wondering why I would ever return to a...randyhate
@xeni country that would see me die rather than allow me & others like me care. What would motivate me to return?randyhate
Or Australia.
Australia universal HC: my bill is $35.00 each one. RT @xeni: Yup. My clinic presents me w/a >$1K bill each infusion.Jennifer Thompson
But the grass is not always greener. As one cancer veteran in Mexico shared...
@xeni In Mexico is even worst. You can go to the "Seguro Social" and ir u are lucky, you can get chemo 6 month after diagnosed #failPriscila Altamirano
Some stories just make no sense at all.
@xeni @MMFlint my sister was DX w/ cancer. Insurance companies delayed her chemo hoping she would die. And she did. Age 39, 2 kids.DC Debbie
@nickdawson @xeni @kimlopark Friends dads oncologist billed for 3 exper chemo treatments AFTER saying he had less than a week left.MsWZ
@xeni My father had nearly 750k in treatments over the span of 5 yrs before he died. After insurance he had to choose bills or food.Tarth
@xeni My friend borrowed money from her dad, who got money via farm loans, for her cancer. She was paying him back with half her paycheck...Stephanie Michel
@xeni My dad accrued 850K in medical bills during cancer treatment. It was nearly a DAILY battle fighting to allow him to stay in hospital.Kristine H.
@xeni He was lucky that his oncologists played phone tag on purpose so he could stay over the weekends, etc. No one should have that stress.Kristine H.
Shannon is a young woman with colorectal cancer.
@xeni we just got a nasty letter from our pharmacy coverage that said they'd be reviewing the approval of the antinausea meds I've been 1/2Shannon Flowers
@xeni taking because of the side effects of the radiation & the chemo meds they paid for. >.<Shannon Flowers
Those who make it through are just grateful to be alive. But that doesn't make it right.
@xeni though we lost just about everything, he was here to see our second son born and will hopefully be there at both their graduations!Ms. Mary MAC
One follower asked a question on the mind of many cancer patients:
List wd be great “@cwoodfield: I know there are tons of cancer research nonprofits; but are there orgs that help people pay for treatments?”Xeni Jardin
And others responded.
@xeni if anyone reaches out to you w blood cancer, pls refer them to LLS copay assistance program http://bit.ly/IW17etmikemilzz
@seanbonner @xeni CA Breast & Cervical Cancer Treatment Program provides treatment toppl w/ breast and/or cervical cancer in needKim Tankersley
@xeni I gave to this org last year: http://www.bowlingforboobies.com/html/about.htmlLisa Beebe
@xeni one is @SOSorg. They help with catastrophic medical expenses. @kimloparkChemoBabe
@xeni @cwoodfield I know there is http://copays.org and then different cancer orgs assist in specific cancer types.MsWZ
.@xeni @cwoodfield Kevin Cain Memorial Fdn. in PA assists local families coping w/financial burdens of cancer. http://bit.ly/HQqZIgKyle Barger
@xeni Xeni, ck the American Cancer Soc website and Nat'l too. There is help with co-pays. They are the best place 2 start. I feel ur painKate Mc
@xeni in NY, people w/o ins and certain cancers are eligible for Medicaid. Unfortunately, not all.Beth Brown
@xeni @cwoodfield Cancer patients should reg w/ ACS asap. There are a lot of programs for helping w/ copays, mileage pmnts, free rides,etc.Lisa Disabella Brown
Sometimes, people with cancer forego medical treatment for "alternatives." Many make this choice out of financial desperation. If you are too poor and marginalized to receive medical care, you do what you can to not die.
So does unicorn piss “@HopeNotDead: But they should use vitamin C IV (10g) to kill cancer. Works fast no side fx. Demand it from hospitals!”Xeni Jardin
@xeni @HopeNotDead My uncle treated his lung cancer with the vitamin C regimen, no chemo or radiation. He was dead within six months.Eric A. Meyer
@xeni i had a young friend with brain cancer who traded a very difficult but effective chemo process for pau d'arco. it did not end well.Iain
No cancer treatment can guarantee life and health. While "alternatives" not backed by peer-reviewed science can be cheaper, they are not a good way to bet your life.
@xeni My husband's aunt ditched her BC chemo in favor of juice and prayer. We all miss her.Andrea Lemon
@xeni Those of us who have had or r going through Chemo must understand the cure is worse than the disease but it is the cureCampLejeune1959
The mysteries of pharmaceutical company business practices are astounding. And they cost some people their lives. 
@xeni Just spent the day trying to figure out how a pharmaceutical company can stop producing my dad's chemo drug, halfway thru treatment.Grant Wythoff
@xeni They can't say when they, sole producers of this particular drug for leukemia, will restart production. So we wait & the demand rises.Grant Wythoff
@xeni and here is why stopping IP extremism matters. The secretive TPP, like ACTA, will make access to medicines worse, everywhere.Submarine storm
Some people with cancer never get treatment at all, preferring silence over the pain and humiliation that comes with being denied care.
@xeni I know more than one person who is no longer with us because they knew they couldn't afford treatment so never told anyone.Sean Bonner
Come on, who wants to beg for their life?
@xeni I've been lucky and will likely raise the $150k that 6 months of treatment costs. But it's ridiculous I need to beg/rely on charity.Poop Strong
@xeni This thread makes me think h/c disparity (despairity?) is form of discrimination. My *life* depends on access to insurance, charity?Kelly Haskins
The injustice is not limited to people with this disease.
@xeni It's not just cancer. Ask anyone who has a chronic medical condition if they are a first-class citizen. #healthcare #fixitLarry Price
Lots of responses.
Calling it a night on impromptu cancer/insurance/health-care-o-geddon RT storm. Still chemo-woozy. Thanks to all for sharing your stories.Xeni Jardin
In closing: if you get cancer in America & you are not sitting on a large pile of cash, God help you. Because our health care system won't.Xeni Jardin
And lots of ironies.
@xeni I don't think I can add anything to this http://pic.twitter.com/hmo4e5hoBen Madeska
Makes you wanna Break Bad.
Gotta go cook some meth in the RV. Goodnight everyone.Xeni Jardin
Here's a followup post I did today on Boing Boing. A good comment thread, and continuing conversation there. Have a read.
When life hands you cancer, make cancer-ade: via lemonade stand, 6yo boy raises $10K for dad's chemoA story making the rounds this week : Drew Cox, a 6 year old boy in Texas, " decided to sell lemonade to help his father with medical bil...
Michael Moore (the filmmaker, of course, who was behind SICKO) linked to this post on his Facebook. There's quite a lively conversation going on there, too. Check it out.
FacebookI hate it when stories like this are flogged as "feel-good" stories. This should make America feel ashamed, not feel good.

Published 3:57 pm Wed, Apr 18, 2012

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About the Author

Boing Boing editor/partner and tech culture journalist Xeni Jardin hosts and produces Boing Boing's in-flight TV channel on Virgin America airlines (#10 on the dial), and writes about living with breast cancer. Diagnosed in 2011. @xeni on Twitter. email: xeni@boingboing.net.

18 Responses to “On Cost and Cancer in America”

  1. This happened to my husband and me. Between us we had one heart surgery, two cancers and   an intestinal bleed in 2 years. We filed for BK in the middle of this drama only to get sick again. This was in 2003/04. We still haven’t recuperated financially. As a matter of fact, our social security checks are the only thing we live on. Try finding work after having cancer and being over 55. 

  2. Erik Hess says:

    I don’t have cancer, but I have a rare genetic disorder (CVID) that requires monthly immunoglobulin replacement therapy that costs about $8-12k/month. Thanks to the ACA/Obamacare/Pre-Existing Condition Insurance Plan I can afford the treatments, but the out-of-pocket-maximum is very tough to handle on a freelancer photographer’s income. Suffice it to say, it’s better than the alternative, which required living with constant intake of antibiotics and regular ER visits to stave off sepsis. Even the low cost of $8-10k/yr for premiums and the out of pocket maximum will be difficult, if not impossible, to reconcile in the foreseeable future.

    Considering that I need these treatments to remain healthy for the duration of my life – at the tune of $100-140k/year – I’ve been watching stories like these and health care reform quite closely. And I’ve got deep sympathy and empathy for folks dealing with similar financial trauma – be it cancer, unexpected broken bones, or any other issue. We didn’t choose this life, this body, but we’re punished not just financially but with the anxiety of making ends meet with debtors constantly banging on the door.

  3. nem0fazer says:

    My wife has breast cancer. Chemo and mastectomy impending. So glad we’re in Canada so we don’t have to flee back to the UK where we came from. BC Cancer agency are wonderful. Good people who are really taking time with us.

  4. technogeekagain says:

    Just wanted to say “Wow; great photo, good eye!”

  5. All the more reason to be very proactive about your treatment. When my mother’s cancer was discovered the first doctor she saw was a surgeon. The surgeon wanted to immediately do surgery, which would have been followed by radiation, chemotherapy and huge bills. But we asked to get a second opinion from an oncologist (this is all within our HMO) and he put mom on a wonder drug. It has reduced most of the tumors to invisibility and has no side effects whatever. Her entire treatment consists of a single injection once a month that through vagaries of her insurance costs nothing at all, and she has already survived years beyond the original estimate given to us. If we had accepted the original doctor’s recommendations she would probably be gone and I would be broke.

  6. Itsumishi says:

    Christ I’m glad I live in a country with a decent public health system.

    Of course the Shadow Treasurer, that at the next election will almost certainly be the Treasurer is currently running around doing interviews about how we need to cut back on our ‘welfare state’, despite the fact that our economy is probably currently the strongest in all OECD nations.

    Interestingly enough he includes the public health system in his description of ‘welfare state’ but opposes means testing government funded private health care rebates, claiming it will force large parts of the population away from private health care that they have been deemed (through means testing) to be able to afford.

    On a side note, Australian politician’s usually receive quite generous pensions on retirement.

  7. Talia says:

    My mother, a breast cancer survivor, currently has to pay about $30,000 a year for health insurance (actually that quote’s from a few years ago, it’s probably gone up since).  It makes me rage so, particularly at the people who insist private health insurance is the best thing for everyone.

    It’s a sick, broken system, yet one people seem determined to cling to with all their might, presumably because change is bad and stuff, but paying huge bills is super-awesome. 

  8. mmcasetti says:

    I am a two-times cancer survivor (both Hodgkin’s and non-Hodgkin’s lymphoma). I also have had a couple more health problems in the last 20 years (I am 34), ranging from a spleen removal to (mild, but present) bipolar disorder.  I survived thanks to the public health service in two European countries (Italy and UK). I survived, and something more – I am currently a PhD student in Maths in a top university, and my husband is a kick-ass software engineer.

    I know I will never be able to live in the USA. Their loss, in the end, but it makes me angry…

  9. ADavies says:

    Thanks for telling these stories. 

    As someone who’s healthy and has a decent (not high paying, but decent) job, I’m happy to pay taxes to help keep costs manageable, so people can get treatment without it ruining them financially.

    Oh wait.  I live in the Netherlands, so I already do pay, and, yeah, really I’m happy with that.  Seriously, money well spent.

    Don’t let the industry, politicians or anyone tell you there aren’t models that work.  Things aren’t perfect here (or anywhere), but I’m convinced most of my fellow Americans are getting a bum deal, especially the ones with cancer.

  10. You all should start walking north.  We’d love to have you in Canada :) The country is 90% empty space anyway.

    And there’s a bit of a statement implied in everyone leaving the US because it sucks so hard. 

    • Arys says:

      Oh, if only immigrating were really that easy…

    • Antinous / Moderator says:

      I’m 54; they’re not taking me.

      • Funk Daddy says:

        You could be turned away for a pre-existing condition that is expensive or a criminal record but your age isn’t a big deal emigrating to Canada. 

        Also if you have say, $80,000.00 in the bank you are a shoe-in. 

        Emigration to Canada is quite easy for Americans in most cases. 

        Not to say there are no hurdles, there are, but I found them to be low, justified and (for non-refugee emigration) evenly applied.

        • Antinous / Moderator says:

          I wonder if, should I decide to try it, having two Canadian grandparents and a mother who went to high school in NB would help.

  11. Kim Parker says:

    Uninsured pt from VA here!! My mind was going a million miles a minute when I was tweeting so it is great to see it all on one page!! What a great convo it was. 

  12. Michael Moore in Sicko put US just in front of Slovenia but mind you, that this 2 million nation has a universal health care. My wife is  a cancer patient for three years, having undergone 6 surgeries with total of almost 3 months of hospitalization, many cycles of chemotherapy (each costs around $2000 – $3000) every 3 weeks, coutless diagnostic procedures – and all that without a single cent of payment other than state regulated mandatory health insurance. Not so bad when it comes to being ill.

  13. Atresica says:

    I knew that stuff was bad in the US, but I didn’t know you guys were being conned with your medicines as well.

    I know someone who had to pay Emend out of his pocket once (switching from foreign insurance to Dutch insurance took a moment) and those were just 20 euro per tablet. The EXACT SAME DRUG.

    60 euro for 3. Not 500. Not subsidised in any way.

    What the hell is happening here?

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