Poop Strong: Cancer patient whose costs exceeded insurance cap wins victory, via Twitter

Arijit, 31, is graduate student in Arizona who was diagnosed about a year and a half ago with stage IV colon cancer. He endured multiple surgeries, and grueling rounds of chemotherapy. Then, in February, 2012, the cost of his treatment exceeded the lifetime limit on his graduate student health plan, which is managed by Aetna.

His coverage was terminated. His cancer was not.

He launched what we cancer patients sometimes refer to as an internet lemonade stand: a site called Poop Strong (a light-hearted parody of "Livestrong"). At poopstrong.org, he invited well-wishers to make a donation or buy schwag, with all proceeds going to his healthcare.

But, big news today, as his pal Kirk Caron tells Boing Boing,

In the six months between when he was dropped and when he'll be picked up by another student health plan, he's been looking at well over $100K in medical bills for his treatments. In addition to updates about his own condition and the state of Poop Strong, Arijit's been tweeting (naturally) about the state of health insurance, and recently, Aetna got involved. The conversation (as Twitter convos tend to do) sort of spirals out from the main thread between Arijit and Aetna.

That's an understatement! Arijit ended up debating directly with the CEO of Aetna, Mark T. Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arijit was dropped from insurance (about $118,000).

"The system is broken," said Bertolini. "I really am trying to fix it."

Arijit is redirecting all of the donations he received the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community (Arizona), to directly assist other people with cancer who cannot pay for the life-saving medical treatments they need.

I spoke with Arijit today, and will be publishing a transcript/audio of our conversation soon. He's a really cool guy, and he has some insights from this experience that I think everyone should hear. It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn't in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can't afford medical treatment. It really is that simple.

Arijit's friend Jen Wang created a Storify of the twitter exchange between Arijit, Aetna's PR reps, and Aetna's CEO. You can read this below.

(Images courtesy Poop Strong / Arijit)


  1. This is wonderful news for him, but what happens to all the other Aetna policyholders when the same thing happens to them? Will the CEO intercede directly for each of them, as well? 

  2. I thought lifetime caps were banned by Obamacare and annual caps were being phased out. Is this not the case? My insurance plan right now doesn’t seem to have a lifetime cap on it (Blue Shield of CA).

      1. I should’ve clarified: my issue was directly due to the fact that I was on a student health plan. ACA guidelines meant lifetime caps disappeared for employer-sponsored plans last year, but the implementation schedule announced for student health plans was slower. More details here: http://www.healthcare.gov/news/factsheets/2012/03/student-health-plans03162012a.html

        Beginning in mid-August, the student health plan offered to ASU, U of Arizona, and Northern Arizona won’t have any lifetime caps — thanks both to the fact that Aetna needs to eventually comply with ACA requirements and the fact that the ASU reps on the committee negotiating the new plan were absolutely insistent on it.

        1. I would like to know why ASU ever negotiated a plan wtih a 300K cap. It is so easy to come up with scenarios besides cancer where a student will run up way more than that in costs. An easy one is student getting hit by a hit and run driver and breaking the pelvis.  Half a mil when you add up the rehab costs. 

          1. While I certainly can’t speak for the Arizona Board of Regents (ABOR, the controlling body for ASU, U of A, and NAU — who administers the student health plan), I suspect there were a few factors at play.

            For one, perhaps even more so than other public institutions, the Arizona public university system is fairly constrained for money. This means they can’t afford the sorts of plans that schools like Harvard, for instance, offer to grad students. Keep in mind, though, that ASU isn’t an outlier. Most colleges and universities haven’t offered especially comprehensive health insurance plans. (See this GAO report [.pdf]: http://www.gao.gov/new.items/d08389.pdf and a recent post at Think Progress on the weak coverage of some plans: http://thinkprogress.org/health/2012/06/04/494335/student-insurance-expanded-coverage/?mobile=nc).

            Part of this, it’s worth noting, is because the insurers had overwhelming bargaining power and were likely treating these plans as an almost pure profit-making venture — at times pocketing more than 1/2 the $ they collected in premiums as profits, while paying out a minority of collected premiums in actual claims. (For instance, see here: http://www.nytimes.com/imagepages/2010/04/09/nyregion/09colleges.html?ref=nyregion).

            My suspicion is that the insurers were willing to offer more generous plans, but charged far more for those plans than public institutions were able to pay. Which is absurd, frankly, since students represent a healthier-than-average population and they are covered for a limited amount of time; hence, it’s exceedingly unlikely many students will ever be in a situation like me. As such, I’m pretty sure the actuaries working at these companies are well aware that the increased costs in terms of benefit payouts by the insurers if benefits caps were to increase would be fairly minimal, especially when spread across a relatively large population.

            Interestingly, when the companies were limited in their Medical Loss Ratio (the amount in premiums collected that must be paid out in benefits — one of the provisions of Obamacare) and required to lift lifetime caps, the new plan offered by Aetna to ABOR (the one I mentioned above, that begins on August 16) costs no more than the previous far less generous insurance plan. In other words, thanks to some of the new regulations limiting how much insurers can mark up their product and pocket extra profits, we just called their bluff. We’ve now got a far more generous product (e.g., the $300k lifetime cap has been replaced with a $1 million annual cap, and all caps will disappear by 2014) for the SAME COST. 

            So, either this means: (1)  ABOR and many other university systems in the past for some reason decided to go for a low-quality product even though they could have purchased a plan with greater benefits for the same price; or, (2) the insurance companies inflated the costs of more comprehensive products in the past because they were a pure profit-making venture, virtually unrestricted in terms of how much they were paying out versus how much they were collecting in premiums. Universities had little bargaining power and they ended up with a crappier product and the net result was that students like me suffered. 

            Which of those two options do you think were more likely?

  3. This is pretty cool. This is part of the dream of social media that is so easy to get jaded about, the ability to create more flattened communication networks. Obviously, this is just one life and insignificant compared to the many who suffer, but it could be a tiny start to an avalanche of consumer revolt. Here’s hoping it’s a fairly painless change and it’s not a simple reshuffling of winners and losers of the same extremes.

  4. I totally disagree that “The system is broken.” The designers of the system intend it to work this way, earning a profit for some people, exhibiting only as much concern for human beings as necessary to maintain good public relations. It’s called capitalism. If the goal of our health care system were changed to keeping people alive or healthy, we would need to remove profit from the system. The system is evil, but it works perfectly well.

    1. As someone who identifies themselves as a Republican and not a fan of “Obamacare” I think what you wrote expresses how I feel in a very neutral way.  The goal of healthcare shouldn’t be about making money, (not that doctors can’t pursue a field that yields good margins, like plastic surgery) it should be able saving people’s lives.  Capitalism and “doing the right thing” seem to be like oil and water (they can make a nice vinaigrette or if left alone long enough you get greed OR compassion.)

      One area I keep wondering about is our advancement of technology.  If a hospital or company is buying the newest models of equipment on a fairly constant basis to stay at the forefront of their field then those costs have to be passed on to the consumer.  In the tech world “fab” plants work in similar fashion.  Each generation costs about double to build than the last, with a retro fit being cheaper than building a whole new system.  However the idea is each time your initial investment goes up, but the number of pieces yielded per run goes up as well.  The two theoretically balance out.  That doesn’t really apply to the medical field in the same way. 

      I know some machines can be “refurbed” so to speak and sold to other smaller hospitals as a way of recouping costs and saving money across the market, but at some point things add up.  I’m not saying companies shouldn’t keep pushing the edge, but perhaps some government assistance could go toward keeping costs in check for everyone.  (I mean I’m in my 30’s as well and hopefully won’t need the use of a hospital for some time to come, but when it comes I’d like them to have access to reasonably up to date equipment without cost being an issue.  Even as an evil republican I think that’s a fair and good use of my tax money.)

      1. Remember, the US government is already spending the $3000 per capita per annum it takes to pay for a public health system. It’s spending more per capita than the UK or Canada!

        The difference is that in the UK or Canada, that’s the bulk of the cost, while in the US people have to pay (on average) another $3000 out of their own pockets.

      2. Not that cosmetic, non-reconstructive plastic surgery qualifies as “health care” under any sane interpretation of the term; rather the opposite.

      3. When you say each generation of advanced technology or equipment costs about double to build than the last, do you mean the costs of raw materials and labor and R&D, or does that include some capitalists squeezing profit out of the medical-device industry? Parasites should be removed from the system anywhere they can be found.

  5. I lost my job and my health insurance. My post-op cancer medication costs $3000 a month–right, about $100 per pill that I am supposed to take each day but haven’t for a couple years.

    I have no idea if new cancer has grown–I can’t afford to pay for a CT scan, and most places require a doctor order it.

    The system is broken, and I might die of cancer because of it. But, I won’t know until I die–can’t get an update–no insurance.

    Update: I had GIST and the medication is called Gleevec (someone asked in email.)

    1. I am not liking your situation at all — it sounds very frightening  — but I think that it is important to speak up about the exceedingly grim realities of this horrifying system.

      1. You’re lucky you’re not my mother.

        Let me reassure folks–my tumor was cut out, along with half my stomach for good measure (literally). I am supposedly cured, but could indeed suffer a recurrence, however unlikely, which was the reason for the meds.

        Yes, I should be on them.

        1. I’m a cancer survivor myself, but luckily don’t have to take meds now (other long-term side effects, but that’s a different story). Your situation makes me fume, and worry. When I was under treatment, some of my fellow patients in the support group were receiving free or low-cost care from a community health center. I’m assuming you’ve checked that out? Or even written directly to the company that makes the meds, requesting free or cheaper ones? Obviously, the whole system sucks and you should never have been put in this situation. But until it’s better, I hope the odds continue to be on your side…


          1.  PS – sorry if I suggested things that you almost certainly have already looked into (I know that can be annoying). It’s just so frustrating, and I have extra empathy for fellow survivors – and fellow teachers!


          2. I have checked out other options, and I did not take any offense at your suggestion. I appreciate it, actually.

            My tumor, which was attached to my stomach, had clear margins. Cutting out the tumor and the half of my stomach that had the tumor attached to it was considered curative, so I don’t worry much.

            But, the fear of recurrence exists inside me. That’s not comfortable, but it doesn’t quite scare me to death. Yet.

            Thanks for your advice.

            If anyone wants to help me, I am starting a non-profit preschool for under-served kids. You can make a tax-deductible donation at http://www.tsoth.org

            Once it’s up and running, I will get insurance! And I will help some kids! Come on, folks!

  6. I’ve always been curious about the logic behind naming an insurance company after a geologic feature that frequently blows up.

  7. Next year, when Obamacare goes into effect, these things can’t happen.

    Remember that next time you hear someone talking about what a “disaster” Obamacare is. 

    For god’s sake, we need to put the health insurance companies out of business.  If you think about their business model, it comes down to paying less health care costs than the amount that their customers pay in and pocketing the difference as profit.  That’s got to be one of the ugliest business models on earth next to making cheap handguns and 100-round magazines.

    1. oddly, i don’t feel that way about life, household, or car insurance. Glad for the peace of mind that IF i get sick, dead, or my house explodes, i’ve got some recourse other than penury.

    2.  It’s not a zero-sum game, that’s just the lie you’ve been fed. Insurance companies get a – more-or-less – guaranteed income every month. Given the size of the US health insurance market, that is a MASSIVE income every month. They get to invest that money in the short term, and make /more/ money.

      They could pay out 100% of what they take in in premiums, and still make out like bandits. Instead, they profit on investments AND stiff customers on their premiums.

    3. The point with any insurance is that everybody pays in the average amount, rather than most people paying very little and an unlucky few going broke.

      As among the members, it’s all good. The problem is that the administering entity has other incentives, more so if it’s a corporation.

  8. The system will still be broken even if there is no cap on insurance payouts. I realize the focus here is on the insurance company; however, there is also the issue that care providers can charge vast sums of money, pretty much unconstrained by logic or common sense. In almost any other field of commerce, you negotiate ahead of time for how much you’ll pay for something. In healthcare, they do whatever it is they’re going to do, and then present you with the bill according to their reckoning. In theory insurance companies should be able to negotiate to keep these costs down, but just looking at the rate of inflation for healthcare costs (versus everything else) it appears they are losing the battle.

    1. Well if your slice of the pie was coming from the total amount of money moving through the system, you probably wouldn’t do a lot to slow the growth of it down either.

    2. This!  My kid needed dental surgery, the dentist said it would be a few hundred dollars.  Try $13,000.00, which we didn’t find out till after the fact.  Until doctors and hospitals have to honestly state costs up front and we can shop around none of the rest is going to make a difference.

  9. Single Payer national healthcare. The UK hate it so much they dedicated a portion of their olympic opening ceremony to it.

  10. As a Britisher, I find these stories somewhat disturbing. Even moreso when I look at your defence budget.

  11. Lavarera, I know many Brits, have family from UK and grew up in Canada. I can tell you without a doubt, Brits are not complaining about their healthcare.

    Don’t believe it.  They sure wouldn’t want what the American’s have. It’s an absolute disgrace what the USA spends on defense but won’t spend on keeping their own citizens healthy.  It’s also unforgivable at what the healthcare providers charge. I’ve seen co-pay bills that put a lot of Americans in bankruptcy, or caused them to lose their homes. 

    1.  Indeed. I’ve had a medically unexplained persistent cough for 3 years, for which I’ve had a number of chest X-rays, MRI scans, gastroscopy, asthma and allergy tests, referral to respiratory specialists etc, and in the past month due to my reflux and a helicobacter pylori infection, I’ve been admitted to hospital for dehydration as a consequence of being unable to even keep down water and am currently taking 3 weeks off work for it . I’m on 7 separate prescriptions as we speak.

      How much would that cost me in America?

  12. Yeah. I just saw the bill from a recent emergency surgery I had. Totaled $36,000.

    I have good insurance so I paid about $300 out of pocket. But damn.

    I’m okay now — the surgery fixed what needed fixing. The condition is controllable through insurance-covered medication, so it probably won’t recur and require another surgery. (It’s not cancer.) (It was caused by genetic predisposition, not by choices I made, not that that should matter.)

    My unlucky roll of the dice could have been a lot worse. It makes me sick with worry to think about it. And then it makes me furious that I live in a country where I have to worry about that so much.

    My good insurance is based on being legally married to a partner who managed to get a job with full benefits including unusually good, low-cost health insurance — a job he’s actually ready to move on from to start his own business, but doesn’t feel able to do so unless I get a job with equally good benefits, because what if something like this happens again?

    So many life decisions have to be based on figuring out whether they’ll prevent you from being able to go to a doctor when you’re sick. And you can’t control all the variables.

    My best wishes to Arijit — for healing, strength, and lack of insurance struggles.

  13. “Lifetime limit”? 

    Oh the hell with this, let’s be socialists already, this…hey!  Did someone say “death panel?”  I guess the right wing has a point; corporations ARE more efficient…why waste time with a PANEL when you can just deny them health care right out of the gate?

  14. “The system is broken,” said Bertolini. “I really am trying to fix it.””

    With respect, in this instance it is not broken.  The limit is there, it is known, it is in the policy it affected how much the insurance cost.

    Just like other forms of insurance that have specific policy limits, you can or should be able to arrange for coverage that kicks in when the initial policy limit is met.

    If you have a policy that pays $100,000 on your house but your house sustains $200,000 of damage, the insurance company is not responsible for that difference.

    If you felt you needed more coverage why did you not buy it?

    1. Healthcare is not like home owners insurance.  You can judge how much you need in for homeowners insurance.  How much is good enough for health insurance?  No one really knows.  Plus health insurance is far more expensive than homeowners inurances. 

      So, to get that extra coverage how much more would that cost?  Many people with families allready spend well over $250 per month for health insurance meanwhile their homeowners insurance may be 1/5th that cost.

      Medical insurance is broken, medical billing practices are broken, the whole system is broken. 

      1. $250 per month for a family’s health insurance premium? Surely you dropped a zero there!

        I pay $700 per month just for myself.

  15. I developed a severe disability at the age of eight, and have had frequent hospital stays and operations in the thirty years since. As a result of the pan relieving drugs I took I have kidney stones. Recently, I created my own tech start-up. Because I live in the UK my parents were not bankrupted and I can afford to take the risk of being an entrepreneur.

    It weirds me out how Americans put up with healthcare that fails the majority so savagely badly. OK, so a few millionaires and billionaires get better treatment, but is that worth the suffering of everyone else?

    For me, I say Hurrah for the National Health Service and the value for money job it does for everyone. 

  16. Why I can appreciate the need for a just and fair health care system, the bottom line is that they will find another way to get their money. For example, the cost of student health care at UNCC doubled this year due to the increasing cost that is a result of the Obama care act. It seems to be that the rising cost is put on us. Maybe our coverage will be better in the long run, as a result, but we will pay a lot more for it. For the student, though, their is little other choice. The only option I found was to get Blue Cross/Blue Shield coverage for about the same price with a 20000 dollar deductible on everything but prescriptions. That is totally pointless and absurd. Of course, the school forces us to take the school policy if we don’t have our own coverage. I suppose I will be eating a lot more ramen noodles this semester while CEOs get 10 million dollar bonuses. 

  17. Seems like Mr Guha has discovered the seed of a great new startup idea.  Everybody just needs to hire a team of Twitter marketing gurus and then they will be able to pay for their cancer treatment, liver transplant, or premature baby.

    Or we could have a rational sane system.

    Nah. This is Amurrca. Better stick to the marketing gurus.

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