Yves here. I am sure readers have many stories of their own from personal or family experience about how the health insurance industry shamefully goes into denial and delay mode with cancer patients. I know of all of one person who didn’t have a horrible time, but even then, as a widowed middle aged woman (as in she needed to work), slow payments handling plus her having to cut way back on her hours led her to declare bankruptcy. And her plan is now paying for the $14,000 a month in drugs to keep her leukemia at bay.
By Anna Gorman, Senior Correspondent at Kaiser Health News. Previously, she worked for the Los Angeles Times, was a 2011 Nieman Fellow at Harvard University, and taught journalism at Harvard University and at USC Annenberg School for Communication and Journalism. Originally published at Kaiser Health News
Carol Marley, a hospital nurse with private insurance, says coping with the financial fallout of her pancreatic cancer has been exhausting. One example: An $18,400 chemotherapy bill submitted to an insurer with missing information and then denied because it arrived late. “It’s not any one individual. It’s not any one system or provider,” she says. “The whole system is messed up. … There’s no recourse for me except to just keep making phone calls.” (Anna Gorman/KHN)
Carol Marley wants everyone to know what a life-threatening cancer diagnosis looks like in America today.
Yes, it’s the chemotherapy that leaves you weak and unable to walk across the room. Yes, it’s the litany of tests and treatments — the CT scans and MRIs and biopsies and endoscopies and surgeries and blood draws and radiation and doctor visits. Yes, it’s envisioning your funeral that torments you day and night.
But none of these is her most gnawing, ever-present concern.
That would be the convoluted medical bills that fill multiple binders, depleted savings accounts that destroy early retirement plans, and so, so many phone calls with insurers and medical providers.
“I have faith in God that that my cancer is not going to kill me,” said Marley, who lives in Round Rock, Texas. “I have a harder time believing that this is gonna get straightened out and isn’t gonna harm us financially. That’s the leap of faith that I’m struggling with.”
Coping with the financial fallout of cancer is exhausting. And nerve-wracking. But the worst part, Marley said, is that it’s unexpected. When she was diagnosed with pancreatic cancer last summer, she didn’t anticipate so many bills, or so many billing mistakes. After all, she is a hospital nurse with good, private insurance that allowed her access to high-quality doctors and medical centers.
Randall Marley, a computer systems engineer, said he frequently comes home from work to find his wife not feeling well and frustrated having spent a precious day of her recovery making phone calls to understand and dispute medical bills. One recent night she was in tears and “emotionally at a breaking point,” he said. “The hardest part of this is seeing the toll it’s taken on my wife.”
Piling On The Pain
More than 42 percent of the 9.5 million people diagnosed with cancer from 2000 to 2012 drained their life’s assets within two years, according to a study published last year in the American Journal of Medicine.Cancer patients are 2.65 times more likely to filefor bankruptcy than those without cancer, and that puts them at a higher risk for early death, according to research.
But those statistics don’t convey the daily misery of a patient with a life-threatening disease trying to navigate the convoluted finances of U.S. health care, while simultaneously facing a roller coaster of treatment and healing.
Stephanie Wheeler, a professor at the University of North Carolina at Chapel Hill, said the number of bills coming from different providers can be overwhelming.
“It’s oftentimes multiple different bills that are rolling in over a period of several months and sometimes years,” said Wheeler, who has conducted survey researchwith metastatic cancer patients. “As those bills start to accumulate it can be very stress-inducing.”
Given many patients cannot work during treatment, these bills may force even relatively well-to-do cancer patients to take out second mortgages, spend college savings or worry about leaving debt behind for their families, Wheeler said.
Carol Marley is a slight woman who dotes on her two dogs and is involved in her church. Her 88-year-old father, who has dementia, had moved in. She and Randall pride themselves on living frugally. They pay their credit card off every month and don’t have car payments.
Marley and her daughter, June Marley — a second-year college student — have health insurance through her employer, Ascension Health, a large, faith-based health care system with facilities across the nation. Her husband has separate insurance through his job.
They were hoping to retire early, buy an RV and drive around the country. Instead, they see their meticulous plans disappearing, even if Carol recovers. Their high-deductible insurance policy meant they had to spend $6,000 before their insurance started covering her treatment expenses. They hit their annual out-of-pocket maximum of $10,000 well before the year was over. But Carol Marley said she was prepared for that. “What I didn’t anticipate is the knock-down, drag-out fight that I would have to engage in to get people to see there were errors and address it.”
Since she’s unable to work, the family lost her nursing salary.
“Money is not coming in, and it’s going out by the thousands,” she said.
Coming To Terms With Diagnosis
Marley had treated cancer patients before. She had seen them come in with unexplained aches and leave with devastating diagnoses. Now it was her turn. Though she didn’t recognize it at the time, her symptoms were textbook. Fatigue. Back pain. Weight loss. In July, doctors told her she had pancreatic cancer.
Her first thought was that she was going to die. A nurse friend asked if she had her affairs in order. That’s because pancreatic cancer is usually discovered too late. Just 9 percent of patients are alive five years after diagnosis, compared with 90 percent of breast cancer patients. Marley knew she was lucky. Hers hadn’t spread. She might be able to undergo surgery. But first, four months of chemotherapy and five weeks of radiation.
The chemotherapy — seven or eight rounds, she can’t quite remember — drained her. “I couldn’t put words together in my head,” she said. She had muscle spasms and developed fevers that landed her in the emergency room.
As she became weaker, Marley realized she could no longer care for her father at home. On a recent morning in early January, Marley sat down with nurse from a memory care facility where a space had become available. Holding back tears, Marley told the nurse she knew this day would come. “I didn’t think it would be so soon, and I didn’t know under these circumstances.”
Becoming Her Own Patient Advocate
Later that same day, Marley’s energy was up. She adjusted the colorful scarf on her head, turned on her computer and pulled out a pen. Some days, Marley said, she spends hours trying to clarify and fix medical bills. “But I don’t do that frequently because it is so fruitless and it is stressful,” she said.
Often, she is just trying to figure out what different bills mean. “Even as a nurse, I feel like it’s impossible to understand,” she said. “I can’t make heads or tails of it.”
Sometimes there are errors.
Part of the problem, she contends, is that one insurance company covers visits with Ascension providers and hospitals and another company covers pharmacy claims and specialty drugs and providers outside of the Ascension network. Some of the bills, including one for $1,400 from an ER visit — were sent to the wrong insurer, she said.
Marley cited other issues. An $18,400 chemotherapy bill submitted with missing information and then denied because it arrived late. A $870 MRI bill denied because the provider said there had been no preauthorization.
“It’s not any one individual. It’s not any one system or provider,” she said. “The whole system is messed up. … There’s no recourse for me except to just keep making phone calls.”
On this particular afternoon, Marley has a long list of calls to make. One to figure out why she couldn’t access her insurance claims online. Another to a medical provider that urged her to pay $380, even though they acknowledged they owed her about $80 of that total.
Someone who answered the phone again suggested Marley pay the entire amount. “Once it’s posted to your account and it goes through,” the woman said, “we would send you a check.”
Marley shook her head. “I’m sure y’all are fine people over there, but I’m not trusting a refund to come,” she responded, reflecting on her experience as a consumer of cancer care. “The problem is, they want their money and they are going to get it one way or the other.”
As for her hospital bills, Ascension declined to comment, citing protected health information. But spokesman Nick Ragone said, “The matter at issue was favorably resolved.”
He did not say which issue was resolved.
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I am surprised that people going through this wringer are only 2.65 times more likely to file for bankruptcy: I’d have expected sky-high bankruptcy rates.
I am your next anomaly. In April of 2018 I noticed blood in my stool and went in for a colonoscopy. I came out of the colonoscopy in early May as a cancer patient. Mine was early and curable. I have Kaiser Permanente and they moved both quickly and achingly slowly – 8 weeks is apparently fairly typical for tests and prep prior to starting treatment but it sure felt like it took forever. Six weeks of chemo and radiation later I’m cancer free. Total out of pocket was around 4k. My three weeks off work were covered by sick leave and PTO.
Cancer experience and cost has a whole lot to do with your employment status and coverage provider – which is to say that it’s a crap shoot. It shouldn’t be a crap shoot in the wealthiest country on the planet.
definitely not going to even try to speak for anyone else….my anecdote:
older relative (who just entered in remission) had no problems using Medicare and a supplement plan (via UNH) to pay for her IV chemo and targeted protein inhibiting pills. Full retail cost, $100 per pill or >$3,000/month.
Only advice: read the fine print on one’s prescription drug coverage, have a positive attitude during chemo/drug therapy, eat well—not too much, mostly plants.
Good luck to everyone out there fighting cancer.
I guess the real lesson is that patients need an advocate. Usually nothing beats family. Especially if enough family are around to share the burden (reviewing bills, escort to hospital visits, cook,etc).
Alas for many that just isn’t possible given the atomized, spread-to-the-4-corners nature of the post-WWII American family, smaller family sizes, and the slow erosion of community bonds (church, VFW, local Lodge, knitting circle, etc.)
Umm. . . you need more than just an advocate. You, essentially, need your own doctor/nurse/advocate who is willing to fight like a cat to get the insurance company AND the hospital to treat you fairly and competently. Having family try to do the work that requires a professional is only spreading the despair.
The system seems designed to require ‘professionals’ to navigate it. This is another ‘rent extraction’ opportunity.
I’m reminded of the scene from the film “Tootsie” where the Tootsie character is supposed to give some poor battered woman advice to, in effect, seek professional help. The person playing the Tootsie character advises the woman playing the poor battered patient to do something violent to the man who battered her. When taken to task by the director about deviating from the script, the ‘character’ of Tootsie retorts that; “This woman is poor. She cannot afford professional anything. Telling her to ‘get help’ is plain stupid. Show her how to help herself.”
We ‘deplorables’ are at that self help stage of existence.
The “system” despises anyone who attempts to protect patients rights and demand fair and competent care. Believe it or not, even the nurses are in on the charade. They know full well that the 5 minutes of instruction on how to use a pair of crutches will be billed-out at $400 or more!
I recommended a professional in-hospital advocate because it is exactly what my medical Insurance provider demanded after receiving exhorbitant hospital billings. The insurance company provided an independent, registered nurse case worker during my hospital stay.
Ah. Elites fighting amongst themselves. Now I understand. Glad your case turned out all right.
to add one last thing—it was maddeningly depressing to be along side solo cancer patients waiting in the lounge for their appointments. I always hoped that I was just seeing them on an atypical day.
No one should fight cancer alone.
Not only is the waiting room of the chemo clinic depressing, but the actual group infusion room was a microcosm of the human condition. I sat in there with Phyl during her hour long ‘chemical dependency sessions.’ You are right about no one deserving to go through this experience alone.
I was impressed at the small creature comforts handed out in the treatment room. Simple stuff like coffee and snacks. Later I realized that this ‘largesse’ was Picayune compared to the thousands of dollars per patient, per treatment, the clinic was raking in.
Money and greed are eternal corruptors.
maybe whoever might have gone with them HAD to WORK. The reality is time off work is often non-existent, and if I was dying I kind of doubt I’d see people who need to work and have no financial cushion and no easy time finding other work risking losing their job to keep me company in my cancer diagnosis.
Maybe, and maybe not. Loneliness is very common disease in the west, particularly in the US of A.
No social cushion and no social support. Lots of people choose to lead disconnected from family. Some families are not worth to be connected to, plus financial burden which prevent people supporting their relatives.
Go and visit retirement homes and see how many are there who had not have a visitor on months.
I can only dream of such ‘care’ were I to be diagnosed with cancer .. or any othe malady for that matter. My recourse, should I be found stricken, is to either ignore the diagnosis and try to continue living as best as possible under the circumstance … or go straight into bankruptcy, whilst enjoying the benefits of appliance-box-in-the-brush living ! I have a close sibling, who as benefited by receiving a host of treatments and care for their various life-threatening illnesses and accidents (through Kaiser, no less) they have confronted throughout this past decade, and believes that anything else (e.i. Canadian style health services) is ineffective and OMG Socialismmmmmm !!
Well, said care is part of their retirement ‘package’ for working for the State of California. Nice perks, eh !! As for myself …. well Dream On .. chump !
and people wonder why government workers will be well maybe not first to the guillotine or up against the wall but … maybe in due time …
When I started in government work 30+ years ago, private industry employees in comparable jobs got better pay and benefits than I did. They’re still paid better while working, but their retirement benefits (pensions, health care) have been stripped away. Newer government employees don’t get the same benefits that I did either. Yes, I was lucky, but I don’t think that I have things that everybody else shouldn’t have.
The latest example of this: https://www.npr.org/2019/03/01/699261989/westmoreland-coal-can-end-benefits-for-retired-miners-judge-rules
I don’t think Americans understand that the best insurance pools are generally the biggest and broadest ones. In the health care case, that is the society-wide pool. Smaller pools, like individual companies, have much higher rates of failure.
The real lesson here is that this level of dysfunction exists in the upper layers of the “medical insurance” population spectrum. In the “lesser layers” the extraction friendly chaos is purely and simply entropic. It tends to favour the bottom feeders.
As an example: we visited a nearby regional cancer treatment and research centre a year ago. This idea foundered due to the narrow range of options offered Phyl. All the extant clinical trials in this organization were based on a substance Phyl had already been given and had not had a good reaction to. We parted ways with this organization. Now, we regularly get letters in the mail from this organization’s fund raising arm urging us to “remember this organization in your will.” The left hand knows not what the right hand does. Which has become an opportunity for arbitrage.
If I were an orthodox religious person, I believe that I would, at this stage of the fiasco that is life, volunteer to enter the Infernal Realm and, a la Dante’s Beatrice, be a cicerone for fund raisers and other financial scammers. I would gladly lead each to his or her ‘Funds Raising Desk,’ down in the, appropriately named, boiler room. Each would have an un-comfy chair, with a sparsely filled bed of nails for a seat, or, for the heads of department, single needle sharp nail to perch on. The phone would be, naturally, red hot to hold, but the only way to meet your quota. All calls would be put on hold. All paperwork would be ‘lost’ by the end of the day. Everyone would be required to work overtime, eternally. And let us not even think about those ‘morale boosting visits’ from the “Boss.”
Ah. I feel a bit better already. “Egalitarian Ideation” has it’s charms.
An idea from engineering comes in focus concerning this subject. The more moving parts a machine has, the more probable a breakdown is. Today’s insurance based medical funding system fits this paradigm perfectly. Now let us add some dishonest ‘actors’……
“Now, we regularly get letters in the mail from this organization’s fund raising arm urging us to “remember this organization in your will.”
WTF!!!!
Yes. My reaction also.
Once I had sat down and thought it through, I found that this behaviour was logical, for an institution.
Roughly speaking, fund raising is a Prime Directive in any large organization.
As such, the ‘shotgun’ approach is probably the most effective for the resources expended. Which goes to show that Statistics is in control. The basic Philosophy being relied upon is mechanistic and not humanistic.
Welcome to the World of Numbers.
Cynical old me uses a simple measure to evaluate the relative merits of organizations. If the organization has a dedicated, professional fund raising bureau or department, then it is too big. At that point, the Law of Diminishing Returns usually kicks in.
Short form: My reaction too.
Send them a check for two cents and outline why.
Anecdote of the embedded “bezzle”. My wife was diagnosed early stage 2 – very treatable and all was fine in the end – All of my sympathy goes out to anyone dealing with this horror show alone.
Long story
we were on an expensive ACA plan – we didn’t get subsidies, …. but it was in the year of roll out. Insurance companies kept quiet about re-reimbursement rates to hospitals for these plans until they got their own rates set, Hospitals appear to have signed up to provide service assuming rates for similar corporate plans would apply to the new ACA ones Turns out that was not to be the case, so hospitals were dropping these plans just as we needed them.
One major hospital insisted they took the plan but didn’t (they only accepted the corporate one). It seems the hospitals had over-invested in capacity and were “selling” their service aggressively. We had to wade through legalese to work out that we would be on the hook for everything if we went there.
Another said they took the plan, but they were in the process of dropping it. Under rules had to give the insurer notice (60 or 90 days, I am not sure because we were not aware this was happening) anyway, we got delay, after delay in making an appointment until just a few days within the cutoff to get imaging done (no hospital would accept images fromanother, which is the bezzle part). So off my wife went with images of her diagnosis, paid a co-pay for more images. Finally got the same diagnosis that she already knew via a phone call that said, “yeah you need to get that treated cos its aggressive”. At which point we were told to call the breast center who said no, don’t take that insurance any more,
Three months of searching and practically begging before we finally found a hospital 30 miles away. And so many “tests/imaging” that were all saying the same thing.
Oh yeah, and the hospital that lured us into unnecessary delay and expensive tests (with a big co-pay ) sent a fund-raising (begging) letter just three weeks later … “maybe it was a kind word from one of our nurses ….” dafuk
. total outlay ~30k because treatment spanned two calendar years … three months of delay before any treatment whatsoever… shameful
Oooh yeah and one other anecdote. After chemo when on follow-ups in an amazing hospital with great staff my wife witnessed a heart-breaking scene. The nurses would leave out coffee and breakfast pastries for all in the waiting room. One person started eating them and went back many times, until an old man started shouting that the other guy was taking too much.
A nurse had to come out to break up an argument before it got physical. Both guys with their wives. Turns out the guy taking the food was hungry – no money – and the old man arguing was there with his wife, She, crying and mortally embarrassed told the nurse they were financially destroyed by her treatment and that he had just been diagnosed with cancer too.
This is America!!
Having watched my Sister in Law go through the Cancel process, and I decided that if I were diagnosed, the best treatment would be to jump off a Cliff.
Don’t despair. Do something more ’emphatic,’ [Redacted for Political Correctness Reasons.]
The Cancel process – ouch, unfortunate typo.
My sister in law had NHS treatment for breast cancer, including a novel treatment because the cancer was so aggressive. In the end, she passed away in her own home with many family members present, plus a Macmillan nurse who stayed throughout. No bills.
Here in America, the phrase “the Cancel process” is a pretty accurate description of how the system works for the ‘lower orders.’
Don’t feel bad about it. Destroy it.
Stories like this are common and a good argument for Medicare for All, which is why the concept resonates and is popular with the public in polls. However, logic and reason and moral arguments in favor of MFA aren’t enough in themselves to overcome the deep pockets and antipathy of the pharma/insurance/medical industrial complex. They are going to fight tooth and nail against it, and will use every trick of psychological persuasion and bribery of congress to prevent any meaningful change to the status quo. Proponents in my opinion need to take a page from Trump and come up with simple, repeatable and memorable slogans and themes to keep public opinion and pressure on our side. Everyone in America can repeat what Trump ran on – MAGA, “Build that Wall!”, “Lock her Up!”. Ask a random person, “What did Hillary run on?”. Answer – “Well, hmm, hard to say exactly, I’m not sure”. Wonky arguments alone won’t cut it.
“Better coverage, lower costs!”
“No more deductibles!”
“You’re covered, period!”
I’m no marketer, so I’m sure we could come up with some better ones, anyone?
Everybody In, Nobody Out…has a familiar ring to it ;-)
I read the Capitol Fax, an Illinois political blog. This post was on the blog today:
https://capitolfax.com/2019/02/28/todays-must-read-22/
From the article
“High on a combination of Norco and Fentanyl, prescribed by a pain clinic, my mother began to throw dishes onto the kitchen floor.
It was inexplicable. And the only way to stop the madness was to call 911.
My sister told the operator my mother was suicidal, which wasn’t true. But it led to a stay for our mother in the psychiatric ward of a nearby hospital.
There, I watched as a doctor who had prescribed my mother opioids for more than 20 years looked at her with a combination of shame and disgust. I’ll never forget that look.
The man who had persistently written prescriptions for Vicodin, Oxycodone and Norco somehow couldn’t understand how such powerful drugs could take over my mother’s life. Or he didn’t want to understand.
That was in 2012. Twenty-nine years earlier — in 1983, the year I was born — my mother, Elizabeth, had been diagnosed with rheumatoid arthritis. The painful disease ate up the cartilage in her body. It forced her to get a replacement shoulder when she was in her 30s. It later led to a second shoulder surgery. To this day, my mother can’t lift her left arm above her shoulder. […]
When we made our fourth effort to detox her off opioids, her doctors refused to go along, saying she would be in too much pain. When she applied for a state medical cannabis card two years ago, she was rejected because her doctor had failed to provide a letter in support.
We called the doctor about that, several times, but he never called back”
Around the 6:05 mark:
http://www.criticalcommons.org/Members/Ghent/clips/saw_switzerland.mp4/view
“How many people in Switzerland go bankrupt because of medical bills?”
“Nobody. It would be a huge scandal.”
As T.R. Reid has written, to get universal health care, you have to first admit that health care is a human right. Universal health care follows after that admission.
We live a sick society.
We have Kaiser and my wife contracted CIDP (Chronic inflammatory demyelinating polyneuropathy) from, of all things, the Flu Shot she was required to get for her US Green Card.
Every time we “change” plans, as in Platinum (CoveredCA) to Platinum (Kaiser Direct) to Platinum (Kaiser Direct) + dental and back to Platinum (Kaiser Direct), we get hit with fees related to her treatments that we are not supposed to be charged.
Now that we’re on our 4th round of this, we refer the CSR to the Incident ID # thingy in Kaiser’s systems and say “Please do that again”. The first time it occurred, it was an 80 hour tax to get it rectified. Second was about 25 hours. Third was around 2 and now we’ve got it down to about an hour.
Best of all, it’s a 10% copay on the procedure. Yet the $15,000 procedure * 10% somehow equals about $600. So my guess is that most people are happy it’s not $1500 and quietly pay the “mistaken” $600. In any case… it’s become our February tradition since moving back to the US from Australia.
Of all the hideous things you’ve described, I’m still stuck on “the Flu Shot she was required to get for her US green card.” How on earth are these things even family blogging related?
I have also been slogging through cancer country since a routine mammo in October showed a questionable spot. There is really not much guidance. Relying on Dr google is useful but not the way to choose a surgeon! Fortunately my GP of many years, now retired, recommended the surgeon she used for her own breast cancer. Its all been confusing and rushed, racing from biopsy to lumpectomy, and now, mastectomy. Even with a background in nursing its hard to navigate all this–three surgeries in two months. So far, money is doing OK thanks to a medicare advantage policy. I keep thinking–what if this had happened during the ten years previous to medicare when I had no insurance?
As another breast cancer survivor (see my long comment(s) below), my thoughts are with you in your recovery. I fully understand how overwhelming it can all be.
Remember to smile. Find the humor in the various hairstyles we go through as our hair grows back in, & any other ways in which you can find humor from this thing that seems beyond your control.
Yes, it can be very daunting & at lightning speed, leaving you with many questions.
The cancer society can be an excellent source of guidance & help you in arranging lodging when needed, as well as wigs, scarves, transportation, & giving you lists of organizations that provide services to cancer patients free of charge. https://www.cancer.org/
Perhaps most important, they can provide for things not covered by insurance, including knowledgeable support from someone who’s already been through it just a phone call away, to help answer your questions.
(My personal tip: cold-pressed avocado oil left on your hair for a couple hours each week will help to restore hair follicles, & strengthen & bring a shine back to your hair as it regrows. I just put a cheap shower cap over it after I’ve massaged it in, letting it ‘marinade’. My surgeon suggested that & actually bought me my first oil. Seems to be helping).
I’ve no doubt you’ll be fine, as you already knew to go to a trusted source to find a surgeon.
Never forget: You are your best advocate.
I’ll continue to send good thoughts your way.
Thank you Crittermom.? I sure never expected breast cancer! None in my family and I lived, more or less, healthy lifestyle but we are so drenched in chemicals these days I am not surprised there’s a lot of cancer. I guess no one expects it. Hopefully, I won’t need chemo but I won’t know for a couple weeks. You are right about help from the cancer society. I might ask them for a few rides–hospital is about an hour away. I’m fortunate to live near a big city with several cancer centers, and SO lucky to discover it at stage 1. I’m sorry my sweet old doctor had to go through this but she did blaze a path for me, so to speak. It really is hard to make all these decisions. My current gp just shook her head and said she didn’t know enough to guide me, advised read up on it and follow the advice of your team. Best wishes.
Last July, my wife became ill. A trip to the ER revealed a heart rate of 32 and BP of 190/? The cardiologist told her not to worry, but stay off the highway while driving. Luckily, the young internist involved ordered a d-dimer test to check for blood clots. Received the d-dimer results after arriving home. The test results were in the 900’s. Contacted her GP, who instructed her to return immediately to the ER. Sure enough, she had multiple clots in both lungs. We were told that the causation of the blood clots could quite possibly be cancer, but they now wait a year for the cancer to present itself instead of doing a full body scan for detection. Giving cancer a years head start seems unthinkable, yet here we are.
I’ve now entered my third year since my diagnosis of stage III breast cancer, so I can relate in some ways to this story. (Cancer gone, I’m now in reconstruction stage, with my next surgery 2 weeks away as they put my body back together after having to tear it apart).
I was treated “very aggressively” according to my Drs & I, too, had problems with billing.
I went through surgery, 4 1/2 mths of chemo & 6 1/2 weeks of radiation while making phone calls to the cancer center billing dept monthly.
The problem was the same each time, with them failing to bill the correct secondary insurer (in my case Medicaid, since I’m now poor, with Medicare my primary due to age).
A new person handled it each month, & each one automatically billed it to an insurer I’m not with!
After 45 min on the phone, the person would promise ‘they’d fixed the problem’.
They hadn’t. Like clockwork, I’d receive another bill on the 19th of the next mth.
I’ve kept a sense of humor through it all, which I found most beneficial to my health, even telling one man in billing (tongue in cheek), “I’ve lived among ranchers for decades & attended many brandings, at which time they also castrate the bulls. If this is not corrected I’ll be paying you a visit”, at which point I’m certain I heard a ‘thud’ as he fell from his ofc chair & hit the floor laughing. He obviously had a sense of humor, as well.
Problem, however, still not fixed.
By month ten of this nonsense, I’d lost my sense of humor with billing & demanded to speak to a supervisor when I received yet another billing error with demand for pymt.
I then went over that supervisors head to the director & explained my problem, telling her that the cancer wasn’t going to kill me but the stress of fighting them over the bill each month may very well do me in.
I was effective, as both called me back the following day saying they had personally looked into it & had scheduled further training. They gave me a direct # to them to call should I have any more problems.
I never received another bill, as they were FINALLY billing the correct insurer.
No one should have to go through that. Especially those of us already sick.
At this point I should mention that after losing my beloved home to the banksters, I’d been forced to move to another state in which I found something I could afford to rent, leaving my social network behind.
I was forced to go through all of this alone, driving myself to & from chemo, radiation, surgeries, tests–all appts–in addition to fighting the billing dept.
I was fortunate that I found a non-profit place for cancer patients I could stay overnight when needed, with the cancer center picking up part of the tab to make it possible for my stay to be of no cost to me.
I agree with Louis Fyne’s comment that no one should have to go through it alone, but sometimes we’re given no choice so must walk alone in this new ‘lifestyle’.
The disappointing part I found in this article is strictly personal.
I think attitude (‘sense of humor’ in my case) is vitally important. I believe the brain is more powerful than any medicine & in combination, they can do wonders.
So when I read phrases like (emphasis mine), ” Instead, they see their meticulous plans disappearing, even if Carol recovers.” “Her first thought was that she was going to die“, I cringe.
Again, this is only from my personal perspective.
I didn’t have a cancer with a high mortality rate as this woman’s story, but I’ll never forget the woman who shared a chair next to me at my last chemo infusion.
She was diagnosed with a high mortality rate of cancer, too, with the Drs saying she should get her affairs in order.
Her attitude was much like mine, in that she said she looked at the Dr & told him, “There’s no expiration date stamped on MY ass!”
It had been a year since her diagnosis & beginning of chemo, & she said she’d surprised all of ’em as they were now using the “R” word (remission). I credit much to her attitude & sense of humor & I smile when I think of how SHE must have handled the billing dept!
The cancer diagnosis didn’t scare me. It paled in comparison to losing my home a few years before, which remains the most devasting event in my life (& there have been several).
I feel extremely fortunate in that I’ve had the absolute best of care & I’ve handled the side effects of my various treatments well, with my sense of humor still intact & my cancer gone.
My Drs & surgeons have each told me I’m their ‘star patient’ (they loved my attitude), but I give much of the credit to their expertise.
I’m also grateful that I now seem to be ‘perfectly poor’ as I like to put it, in that all of my bills have been covered. (Never thought I’d be saying I was grateful for now being poor!)
Which, in itself, is ridiculous, since ALL citizens should have free healthcare without having to have lost all they’re acquired during a lifetime of working.
To anyone going through it, I encourage you to enlist the help of a nurse navigator. Mine has been absolutely invaluable. Not only extremely caring but arranging my appts together, knowing I was traveling from out of town in my 32 y/o vehicle. (I’m looking into nominating her for a Daisy award).
She also arranged for me to receive gas cards through the cancer center to help with that expense, as well as other things.
There’s actually quite a bit of help available but you must do a lot of research &/or have a great nurse navigator on your side to help with your needs, & I’m not sure you must be as poor as I to benefit from them.
But again, it shouldn’t be necessary for patients to beg for help to even survive!
My apologies, fellow readers, for the length of my response to this article. It obviously struck ‘close to home’.
crittermom, I am moved by your story and applaud your courage and good humor. Thank you.
Thanks for supplying a counterweight to my pessimistic comments.
Here’s hoping for a long happy rest of your life.
As Spock says: “Live long and prosper!”
I am so glad to know you came through, crittermom; I remember when you were first diagnosed and never dared ask, though I did register you were still commenting at least.
As your story shows, a sense of humor is SUCH a saving grace, as is the ability to get angry at the right time. Good to know that standing up for yourself also made things better for others, since they implemented some much needed training.
Truly you are an inspiration!
Thank you for thinking of me, & for your very kind words.
With breast cancer affecting 1 in 8 women these days & knowing there are other readers who’ve been diagnosed, I’d like to add this:
Medicare will pay for reconstruction on BOTH breasts, even if only one was cancerous & requiring mastectomy. By law they must pay for the procedure to make them match (since gravity takes its toll over the years).
For those who choose not to have reconstruction surgery, there are 2 sites that provide FREE knitted implants to wear in a bra. They are all made by volunteers. (Donations welcome, so I donated).
I’d ordered one of each, not realizing that having chosen reconstruction I wouldn’t need one upon waking from surgery, so I donated them back to the cancer center for someone else to use.
The first would be my choice since I prefer the way they’re made. They are made to order, so may take 3-4 weeks to receive.
http://awesomebreastforms.org/
https://www.knittedknockers.org/
Manufactured ones can be horribly expensive, as well as heavy, & not necessarily covered by insurance.
Hoping this will help someone going through this.
I guess we have a different cancer story. Three years ago my wife was diagnosed with ovarian cancer. It was because of her excellent gyn that a problem was identified early. She had surgey to remove all of her female organs and surrounding cancer like tissue. Then three months of chemo including chemo directly into her stomach three times. She has been cancer free for three years and tests showno evidence of diease.
We are on Medicare with supplement from Cigna through her last job. Treatment was at at Yale Cancer Center (Smilow). Due to her coverage we got one bill for $300. We assume that the cost of all the treatment would be in excess of half a million. Her care was excellent. Nurses particularly were super. Of coursebeing Yale, there was arrogance from some Docs and the administrators. Fortunately we did not have to deal with administrators.
The stories above are evidence of just how much we need real Medicare for All. No one left out and everybody in. This is our positive story but she is aware of others getting chemo at the same time that are faced with billing errors and beaurocracy that we avoided.
I’ll be honest. I cannot even read this post, or venture into comments. 3 years ago, my twin brother was diagnosed w/ a brain tumor & died after six horrific months during which we fought almost every step of the way w/ his insurance co. (and it wasn’t just the insurance co. -our system required him/us to “shop” for each aspect of his care- there was no real coordinated care).
After a second surgery, I guess the company was getting a little tired of having to, you know, pay for what my brother had paid for via premiums: more treatment?
Scott was pushed out of the hospital & into rehab early, ultimately being “downgraded” into a shabby, understaffed (but lower cost) rehab facility noticeably unresponsive to his needs. And they failed to diagnose an infection properly (likely contracted there), then refused my request to hospitalize him when I saw him weakening rapidly, till the next morning when they did send him, but it was too late. I’ll never forget that morning when I finally got through traffic to the hospital. I’d like to think he knew I was there with him.
My story is just one of many, and many far worse, I’m sure. He had insurance. Our system is a criminal system. But I knew that even before Scott got sick…anyway, three years and I still cry writing this.
tricia, I am so sorry.
And enraged. Someone in the comments last week said they thought we needed skin in the game. How can they live in this world and not think that we’ve had way too much skin in this game.
Thank you for overcoming your tears and sharing this. I am very sorry for all he and you went through.
Thank you for putting yourself through that memory for our benefit. I think you’ve defined how bad it can get, even WITH insurance.
I understand your reluctance to read the account or the comments (you might try Crittermom’s; it’s remarkably encouraging.) My own experience, which was my son with a rare disease similar to leukemia, was much more positive in the end, since he survived and is now healthy (he didn’t have cancer, so little worry of it coming back); but reading the account still brought back the PTSD. We had good insurance – this was 30 years ago – and even so were overwhelmed by all the bills. And that was before most of the crapification, and at a world class treatment center.
Tricia, thank you for sharing your story. I am so very sorry for what happened to you and your brother. You are right, the system is criminal.
Folks:
The system is designed to delay, dispute, and deny billing. This is a feature of the system.
After all the longer payment is delayed the more float is made and the greater likelihood that the patient will just give up.
It’s all so confusing, at first I thought I did owe them the thousands they were billing me for & had even set up a repayment plan!
It took further research on my part to determine they weren’t billing my secondary insurance correctly, so it was being denied. Aha! I owed nothing.
Yes, it’s built into the design to be so, in hopes the patient will give up fighting it or just accept that printed bill as correct.
Like eevrybody else, I have a paol with cancer, and another who has already dies form it. It broke both and left my dead pal’s wife destitute and my fighting pal declaring so whether he ends up winning or losing, the health insurance comapnies and the hospitals and the drug comapnies have broekn him/them.
Me? I’m planning on voting for Bernie if he’s the Democrat’s nominee but otherwise, voting for Trump because the DNC-Democrats are also against Medicare For All . . . as we all know. heck, even Bernie’s plan sucks because it won’t eliminate the whole kit and caboodle of for profit hospitals, co-pays, drug costs, insurance companies, etc.
Sigh!
After a medical experience, which I thank god is not as serious as the people profiled in this article, I have come to realize that besides the ability of medicine to cure people, then the issue of insurance coverage, the third thing is the amazing lack of communication between hospitals, doctors, patients, labs, insurance companies and the patient.
At first I thought it was just incompetence. Then I began to suspect that it’s a deliberate plan to destroy face to face or telephonic communication between patients, insurance, doctors and support staff so as to drive people toward automation.
“Join our health portal”, “sign up for this or that”, “What’s your email?”
Profit making corporations do nothing that is not in their interest.
This process is just a way to get patients responsible for everything and to place your personal data online which means it can be hacked and most importantly to them, will allow the firing of more and more semi-skilled personnel to be replaced with automation. The eventual end game will be a robotic surgeon, assisted by a doctor sitting at first in the same operating theater and later in India or China.
A public hospital several weeks ago. A long line of patients, some on crutches, tottering with overnight bags, all standing and waiting their turn to deal with the “admissions kiosk”, a touch screen with card readers through which one slides their driver’s license and then insurance card. Follow the prompts; Is this you? Picture of your driver’s license-do you agree to XYZ operation? Then all the disclaimers. Sign with your finger–or your fingerprint.
Nobody could make the thing work correctly. Everyone had to be assisted by a lone and stressed staff member. People laughed at their own stupidity and their inability to make it work because they couldn’t properly interact with the robot. I’m a troublemaker, I said rather loudly, “You all are going to get a ten percent discount on your bill because of the work you are doing here and the money they are saving on admissions staff!” I reluctantly made the thing work.
Nice fraud opportunity there. Someone could lift your wallet, slide the ID and the insurance card then get a medical procedure. “I never got that service” What can they say? “You were signed in by the kiosk,” would not stand up in court as their due diligence vs. a live human being having checked in a patient.
Besides being absolutely militant with everyone you encounter about the need for M4A, supporting the best candidate for that, which is IMHO Tulsi Gabbard, do not join a “Portal”. Do not give them your email address, that way you can’t get bombarded with medical spam.
“Sorry, I don’t have a computer or a smartphone” is the easiest way to do that.
Demand and keep hard copies of everything, to and including x-rays on disks, lab reports, which you are entitled to. etc. Do not count on any communication between anyone nor your records being available when you want them or someone else needs them.
You have to get organized with a separate calendar, call list and demand written copies of everything be sent to your U.S.Postal mailbox. Record all phone calls with insurance companies in the open.
This is our life at stake here, get serious.
> More than 42 percent of the 9.5 million people diagnosed with cancer from 2000 to 2012 drained their life’s assets within two years
Everything’s going according to plan!
Bayer makes the pesticides that cause cancer and they make the chemotherapy drugs.
That’s vertical integration baby!
I have numerous billing episodes and screwups with hospitals, insurers and pharmacies, but not because cancer.
Recent amusing anecdote: been getting bills 6 months lately from hospitals and ER’s not paid by my insurance, finally learned they had GEICO, who doesn’t do health insurance, listed as primary.
How many hours wasted on that?
GEICO pays medical claims from car accidents. Was there any reason for hospitals to think GEICO was primary?
Sorry, I meant any reason for your insurance to think GEICO was primary. Any valid reason, I mean, rather than the obvious reason to delay payment!
Yes, an accident in September. I explained this to them many times. And the bills I’m receiving or not related to the accident. Took them 6 months to tell me of their error. But multiply this kind of stupidity logarithmically, and you can see the problems it presents for sick patients.