A struggle against cancer becomes a financial worry

“I walked in a person, and out a cancer patient,” my dad said as we filed home. Crossing this threshold, we found ourselves on the other side of medicine – the side on the exam table or gurney, as opposed to the one standing over it. As a physician I was used to the latter. This is my family’s story in our new position, and how the cost of medical care has impacted us.

My father — an engineer — worked furiously. His “free time” was consumed with jogging, fixing household items, doing yard work — essentially anything to keep busy. As an American employed overseas at diagnosis, he did not have US medical insurance, but rather an annual cap of $500,000 for healthcare. While this amount is generous in Europe, we accepted the exorbitant cost of care in the US so my dad may be near family during his battle with non-Hodgkin lymphoma.

My dad’s care was transferred to the academic institution where I trained. As his advocate, my first task was to schedule a PET-CT. After bouncing between central scheduling and radiology, I was instructed to speak to billing. Exasperated, I explained our situation and inquired how much this test may cost: “$12,000,” I was informed, “is the price for patients without US insurance.” (This was my first encounter with the “chargemaster,” a list of services and prices conjured by hospital administration. Hospitals set the price then expect payment to be negotiated down by insurance companies. Uninsured patients, however, are quoted prices and charged according to this list.)

My body tightened as my eyes watered. This test cost a few hundred dollars in Europe and I knew not “worth” the price quoted: How could we get through the year in need of multiple tests, medications and chemotherapy according to this list?

I negotiated: “My dad really needs this test and we only have a limited about of money.”

Silence.

“I went to medical school and residency here,” I pleaded, “is there anything you can do?”

After discussing with superiors, I reduced our charge by several thousand dollars. I paused, as I couldn’t believe I had to resort to such assertions. My small sense of triumph was clouded in an overwhelming sense of unfairness and anxiety.

That was the beginning. My dad went on to need a stem cell transplant, necessitating several weeks in the hospital as well as rehospitalization for graft-versus-host disease, a complication of his transplant. This disease has been the only thing to keep my dad from constantly moving; it has been hard for us to see him become weak, lethargic and sallow. We were not in control of his disease or its corresponding medical bills.

We asked about cost frequently and kept an informal and approximate record when available: filgrastim, $14,000; echocardiography, $7000; office visits, $300 and so on. Providers often expressed polite concern, replied with something to the extent of “I don’t deal with that” then referred us to billing. Billing representatives never met my dad, or understood his medical condition or need. Providers continued with treatment plans without regard for cost; my family controlled what we could, namely using warehouse pharmacies and doing as much self-care as possible. We found little compassion for our concern.

In time, it became clear we were running out of money. My parents contemplated selling their home or having my mom return to work (something she had not done in 20 years); my siblings and I made plans to subsidize healthcare costs. As my dad fought physically, we all faced this enormous financial worry.

This worry has been intertwined with my dad’s struggle with cancer. Providers cannot separate financial aspects from the esteemed patient-centered care of medical conditions.

Fortunately, my family recently learned of our successful bargain for my dad’s insurance cap to be increased through 2013, after which we are embracing Obamacare to access health services without financial fear. My dad continues to battle on.

We feel lucky for this. We are grateful that all Americans — despite resources, expertise or knowledge of our healthcare system — now have the opportunity to receive equitable and affordable healthcare. As my family is experiencing, the vulnerable position of illness is stressful enough.

Laura Sander is an internal medicine physician.

A struggle against cancer becomes a financial worry

This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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  • JPedersenB

    The way our medical industry “bills” is outrageous and would be considered extortion in any other business.

  • Kristy Sokoloski

    It’s this type of situation why more and more people are having to make the choice not to treat cancer if they get diagnosed with it. Because even for those of us who have insurance the cost of the coinsurance not only for the tests necessary but for the various treatments and the visits to the doctor’s offices 15 or 20% of a lot is still a lot. I had a doctor tell me once that there are places that can do it at low cost and all that. That’s all well and good for those that don’t have insurance so that they can get some of these tests done, but if you have insurance the thought is that if you can afford the insurance then you would be able to afford the coinsurance along with the copays and the deductible. That is not always the case regardless of how much that deductible is or the amount for the coinsurance.

    • Deceased MD

      Isn’t there now a cap with the ACA of how much they are permitted to charge? It is still a lot of money but not nearly as out of control. Isn’t it something like $6600 per year or so as the max out of pocket costs?

      • Patient Kit

        I know that in my state (New York) the bronze plans on the exchange carry a reasonable premium (I forget the exact price) but have $5,000 deductibles and 50% copays for everything (doctors, ER, hospital admissions, surgery, chemo, testing, etc). As a cancer survivor who is trying to climb out of the blackhole of being beyond broke, this kind of insurance plan would not help me if my cancer recurs. It won’t even really help me monitor for recurrence. The platinum plan might work if I can afford the premium.

        My best hope, as I job hunt, is to find an employer who provides good insurance as a benefit. And that is getting rarer. I’d be happy to pay a higher premium for a plan that actually covers something as long as that premium is in the realm of affordable. As I go back to work, Medicaid may continue to cover me for a brief transitional time if my employer doesn’t offer insurance. If I end up one of the millions of Americans who make too much money to qualify for Medicaid but too little money to buy my own insurance, I may have to opt out of continuing with my followup cancer surveillance and all other medical care for a while. That possibility scares the hell out of me. But it’s a very real possibility.

        • Lisa

          Kit, remember that if you make too much money to qualify for Medicaid, you most likely would qualify for a subsidy of your insurance under the ACA. It depends on your income. And yes, the plans have deductibles and co-pays, but they also limit out of pocket costs (to $6,350 per individual in 2014).

          The biggest thing is that you will be able to get insurance under the ACA, despite your prior condition. That was cause for celebration in my corner of the world.

          • Patient Kit

            Oh, believe me, the ACA’s pre-existing condition clause was reason to do celebratory dances around the bonfire in my world too. I’m happy to have the exchange plans as an option but disappointed that they aren’t more affordable and better coverage.

            I’m a little overwhelmed trying to understand all the particulars as I prepare to wean myself off my year of Medicaid, under which I actually got excellent care, all at a teaching hospital, and had plenty of choices. The Medicaid Healthfirst directory of providers in Brooklyn alone is a big phone book and Manhattan is even bigger. No matter what plan I’m on, it’s an advantage to be in NYC versus a small town when it comes to provider choice.

            I certainly hope I find work that pays enough to disqualify me from Medicaid or even subsidies. But I may be looking at working freelance before I find a new salaried position. I swear, sometimes this health insurance stuff is scarier than the cancer diagnosis. I am thankful to still be alive so I can experience all this new stress. :-p

        • Deceased MD

          i am so very sorry to hear about this. I think we chatted before about filing for medicare and i know it is all so absurdly complex. I really hope things improve for you! At least there is now the $6350 per indiv cap as Lisa said. Please keep us informed.

          • Patient Kit

            Yes, we have chatted before about my situation and I appreciate your concern. The out-of-pocket cap is good to know. In the fall, I started looking at the exchange plans in case I needed one. But I had a lot on my plate to deal with at the time and was covered by Medicaid for the moment so I still need to learn more details about the exchange plan options for me, again in case I need one.

            One way or the other, I’m pretty hellbent on surviving this chapter of my life. And once I do, I will never forget what it was like to be in this position in our healthcare system and I will not forget the people who are still stranded there. Obviously, I identify strongly with Dr Sanders’ father’s story so I felt compelled to respond to her post. I’ve been willing to tell my personal story here because I want people to know that there are millions of hardworking Americans who cannot get the medical care they need or pay a huge personal price to get it if they can find their way through the system. I think it’s very telling that Dr Sanders, who trained in our healthcare system, didn’t know how to help her dad navigate it.

          • Deceased MD

            I hope you write up something. It is a disgrace. Even with the ACA, it sounds like you feel you are falling through the cracks of the system. as many people still are

          • Patient Kit

            Yes, even with the ACA, millions of hardworking seriously ill Americans are still falling through the cracks, for a variety of reasons. In some limited ways, the ACA is better for many than pre-ACA. But our system is still dominated by profit driven insurance companies. It seems there was a heavy price to pay them in exchange for them agreeing to the pre-existing condition clause in the ACA. Still, I’m hopeful that it will be easier to modify aspects of the ACA than it was to pass it or it would be to repeal it. It’s important to remember that what we had before the ACA wasn’t working either. As always, my bottom line on healthcare in the US is that we have to take the profit motive out of Big Health. A single payer system is the only way I can see of doing that. Regardless of what changes are made to our healthcare system, in the meantime, people are still falling through the cracks.

            I wonder how smoothly Medicare went in it’s first couple of years, compared to the ACA’s startup. Medicare and Medicaid were probably the last changes to our system as big as the ACA. I do know that it took decades for Medicare to finally deal with the fact that many senior citizens were tossing their prescriptions in doctor’s parking lots because they couldn’t afford to fill them. Medicare began in 1965. When did Part D start?

          • Deceased MD

            good points. i think i went into effect in 2006 but don’t quote me on it.

          • Patient Kit

            I just checked and can confirm that you are correct. Medicare Part D kicked in on January 1, 2006 — four decades after the Medicare program began in 1966. We should use that as an example of how long NOT to take to improve a program.

      • Lisa

        The maximum out of pocket cost under the ACA in 2014 is $6,350 for an individual. A lot, but one major illness or injury and you will have surpassed the out of pocket cost.

        • Deceased MD

          Thanks. You know it is interesting because so few people are aware of this. I was having lunch and the waiter tells us he needs an operation and naturally the restaurant does not provide HC for him. Anyway poor fellow said he has a $12K deductible for himself as an individual. He also was unaware of the ACA mandate.

          • Lisa

            A lot of people get their information about the ACA from Fox News.

          • Deceased MD

            What a scary thought. Very observant of you though. One would think that it is easy enough (well not easy) to apply for the ACA and ask the rep that question. But i am sure your perceptions are accurate.

          • Kristy Sokoloski

            I have had it with Fox News for a lot of reasons. The way they have handled the issue of the healthcare law is one of them. And it’s hard to believe that there was a time that when it came to the way some subjects were handled they did good.

        • dontdoitagain

          Didn’t they do away with the out of pocket caps?

          • Lisa

            They did not do away with the out of pocket caps. As I said above the maximum out of pocket cap under the ACA, in 2014, is $6,350 per individual. The family out of poket cap is around $12,600. I don’t remember the actual amount for that cap.

      • Kristy Sokoloski

        Interesting question but that sounds about right. However, you have to meet that out of pocket max of expenses that you have to pay before the insurance will pay 100% of the cost. So if someone needs medications such as for chemotherapy regimens there’s still going to be a portion that the person with the insurance must pay.

        About how much does a cycle of chemotherapy drugs such as for breast or ovarian cancer cost? And how many cycles on average are required for the patient to have if they are a patient that will be able to handle chemotherapy drug regimens if their history overall and other factors show that this is the way to go?

        I hope that Dr. Dizon and Salwartz have input on this discussion as well.

    • SarahJ89

      Let’s not forget the warped logic of “Let’s make co-pays/deductibles higher so patients will have ‘skin in the game’ and use medical services less.” Or shop around when they are ill in a system that’s gamed against them.

    • Suzi Q 38

      You are so right, Kristy.
      I saw this with my brother in law and his stage 4 pancreatic cancer with mets. The hospital was giving him the full on medical treatment, without regard to cost. They were running up his medical bill at a ferocious pace, as if he had a chance of survival. The PT staff would come in everyday and expect him to walk.
      When his cancer spread to his brain, they offered surgery.
      Teams of doctors came in to no avail.
      I finally told his wife, who was my sister, to ask those that wanted to see him what their purpose was. Unless the examination or procedure was truly necessary, tell them “no.”
      After he died, my sister was left with the co-pays of each treatment.
      She eventually had to sell her home.

  • Patient Kit

    First, my heart goes out to you and your family. I’m so sorry you are all going through this. You are so right that nobody who is battling a serious illness like cancer should have to spend a huge chunk of their energy worrying about the severe financial consequences of being sick in the US. We should be able to focus all of our energy on getting well.

    I was in a similar situation myself this year when I was diagnosed with ovarian cancer after being laid off from a job I had for 18 years and lost my insurance. Determined not to lose my life too, if I could help it, I spent my life savings and went into debt to keep a roof over my head and COBRA for as long as I could. Finally, I was broke enough to qualify for Medicaid after which I got the major surgery I needed. I worked in the nonprofit sector in NYC for my whole life. I never had a lot of money. But I had a simple middle class life doing work that helped others. Until…loud slap! and I fell off the ledge and through the cracks of our healthcare system.

    The fact that hospitals and doctors charge the uninsured their highest fees ($10,000 instead of the $400 they accept from most insurance plans) is one of the most obscene aspects of our severely sick system. So many hard-working Americans are brutalized by this every year. Millions of Americans were forced to file for personal bankruptcy because of medical bills in 2013.

    I don’t delude myself that the ACA will fix everything but it will hopefully help some of us. I hope it helps your Dad. At least, insurance is an option now for the millions of us with pre-existing conditions even if that does not assure access to needed care. It beats no options. It is still a very scary time to be seriously I’ll in America.

    • SarahJ89

      The worst part about medical bankruptcy is how it’s swept under the rug. Patients are urged (forced, really) to put medical/hospital bills on their credit cards. When they show up in bankruptcy court they just look like heavy credit card spenders.

      • Patient Kit

        So true. Maxing out credit cards on jacked up fee medical bills for necessary medical care is not the same irresponsible thing as having an addiction to $500 shoes and awesome leather jackets.

  • Markus

    I think that for things that are less dramatic than oncology, we are going to see more medical tourism. I know someone who was quoted a $43,000 cash price for a gastric bypass not covered by insurance. She had it done in Colombia for $12,000.
    A unit of blood costs $900 in the US, and $150 in Germany.
    Naturally, vendors will charge what the market will bear which leads to high costs when the vendor has legal and institutional power to influence the price. Our government, the largest buyer of healthcare, is legally banned from bargaining down medication prices by the Medicare part D law. The cost of many things makes a trip worthwhile.

    • Deceased MD

      Isn’t that brilliant on their part? Imagine, banned from bargaining. And no press on this. Average person is completely unaware.

  • SarahJ89

    My comment is not meant as a criticism, but more as an effort to figure out where the disconnect it. It’s hard for me to understand how you could be a physician and not know about the billing and outrageous of care, especially for the uninsured. The instant I read about your family’s decision to bring your uninsured father back to the US I thought “Huh???” Now that you understand the situation I’m sure you will be a better doctor, which I suppose is small comfort.

    But seriously, how is it that a doctor can work in a system and be so unaware of such an important set of facts–facts I thought were common knowledge? There has to be some sort of systemic “wall” in place that allows this kind of helpful-to-profit-makers situation to exist.

  • Suzi Q 38

    My plumber and I compared the price difference that medical professionals, clinics, imaging centers, and hospitals charge us patients.
    If you do not have the bargaining power of an insurance company, you are OUT OF LUCK. You could lose the equity in your home in a week if you let the hospital personnel treat as if you. The hospital will charge you the non-insured rate. Your home? Might as well sign the deed over to them.
    I don’t think that there should be two or more prices for anything at the hospital.

    How does this relate to plumbing?
    We had a major water leak in our upstairs bathroom.
    The first plumber we called just sat on his A$$ and let his worker wander about and attempt to find the leak. He could not.
    For this service, he charged us $300.00.

    I then told my husband to “cut our losses” and call someone else, a company with a leak detector whatever. The plumber this company sent was much better. He not only found the leak, but told me not to ever reveal to any plumbing company that I had homeowner’s insurance.
    He said that once that is done, the price doubles or triples.

    Sounds unfair, doesn’t it?
    We discussed how the same thing is done with hospitals.
    The insurance company will only pay so much, but if I didn’t have insurance, the costs would have tripled or quadrupled.