Treating cancer should not be paved in our patients’ financial despair

Treating cancer should not be paved in our patients financial despairMartha (name changed) had recurred yet again — her third in as many years. Despite our best attempts, remission proved fleeting. Fortunately, she had few (if any) symptoms of the cancer in her abdomen; no bloating, no nausea, no difficulty moving her bowels. Her concerns were more psychological — anxiety and frustration because her cancer refused to go away, and indeed, was way smarter than our best standard treatments.

“What else should we try?” she asked.

This was several years ago, and I remember that conversation like it was yesterday. I had returned from the ASCO annual meeting having been in the audience in the plenary session to hear the results of a cooperative group randomized trial showing that the incorporation of a novel biologic agent to treatment in ovarian cancer produced a statistically significant improvement in progression-free survival. It was exciting because these results were consistent with what had been seen in earlier, small studies that involved women with more heavily treated disease, like Martha’s. Following the meeting, I came back to Rhode Island excited by these findings and ready to discuss them with patients.

“Well, you’ve pretty much seen our most active drugs,” I told Martha. “Still, there is hope we can get these tumors to shrink, if not keep them from growing … and since you fortunately don’t have much in the way of symptoms, I am optimistic I can maintain how well you are feeling.”

I went on to list available drugs we could try and then discussed the results with this newer agent. “I think of all the drugs we’ve discussed, I’m most optimistic about this new one. It works in women who haven’t had any treatment, but prior studies have shown it works on women who have already received treatment. I would recommend we try it; if it doesn’t work, we do have other standard options available.”

“Sounds good,” she said.

“Great!” I stepped out of the room to inform our practice nurse of my plan.

She listened as I told her of my plan and after I stopped talking, asked calmly: “You realize that it’s not approved in ovarian cancer, right?”

“Yes, I realize that,” I said. “What’s your point?” I asked, with more than a little irritation in my voice.

“Well,” our nurse continued, “it’s a pretty expensive drug and she has Medicare. So if you want to give it, she has to be aware that there’s a pretty good chance it won’t be covered, and she will have to sign an ABN.”

“What’s that?” I asked.

“It’s an Advanced Beneficiary Notice of Noncoverage (ABN) — and if she doesn’t sign it, you can’t give it.” And with that, she left the clinic.

I learned that an ABN should be issued when the clinician (or his institution, in this case) believes Medicare may not pay for it or may not consider it as medically reasonable or necessary for the patient, despite any prior record that Medicare had covered it in the past. The ABN is meant to protect the institution from nonpayment by getting the patient to accept the financial liability that comes with Medicare nonpayment. Essentially, it guarantees someone will pay for the treatment — even if it means the entire bill rests with the patient.

I went back into the room with an ABN form, and a pit in my stomach — annoyed that I had to talk costs of care with my patient, when my job as a doctor was to provide what I felt was the best care I could give. We talked about costs and I told her of the possibility that this agent would not be covered. Because of this, she would need to sign an ABN. At the conclusion, I told her,  “I promise you I will fight for coverage and based on this and other data in ovarian cancer, I think I can make a good case for its use for you,” I said.

“You keep saying it’s expensive; but how much does it cost?”

“I’m not sure, because we would need to take into account the costs of infusion as well. But the drug itself is expensive — about $4,000 per month, maybe.”

“And if my insurance denies it, I have to pay for it — up to $48,000 in one year?”

“Well, I don’t think that’s likely to happen, but in the worse-case scenario, yes.”

She sat there for a moment, unsure how to proceed. I could only imagine the dilemma she faced — on the one hand, she wanted access to a promising new drug, one that was shown to help keep the disease from getting worse, and maybe, help her live longer. On the other, it was so very expensive, and I  could see her struggle with the cost — imagining what she could do with $48,000, especially since time was not at all a guarantee?

I wish I could say this was an unusual circumstance, but since then, I find myself engaged in conversations with patients about new agents, new trial results, and whether or not these drugs are available for them. I have had to learn about costs and coverage, and what it might mean to each patient. I have discussed ABNs with multiple patients after Martha, and each time, I come face to face with patients who refuse treatment, refuse to sign the ABN, or prefer a different approach. It is the interplay between goals and preferences and evidence, viewed through the prism of real circumstances, financial ones included.

As oncologists, we have a duty to take care of our patients — mentally, physically, and more and more, fiscally. A recent piece in the New England Journal of Medicine laid bare the problems our patients face with cancer care, especially when we are not willing to engage in discussions of costs before we start treatment. As detailed by Ubel, Abernathy, and Zafar, even standard of care treatment can result in thousands of dollars in out of pocket expenses – estimated costs that even a seasoned oncologist would have trouble paying.

In Martha’s case, she decided to play her odds. “I’ll commit to two doses of bevacizumab and then we’ll see. I think I could come up with $10,000 if I needed to.”

“Well, I hope it doesn’t come to that!” I stated. She signed the ABN, and we made plans to treat her.

Afterwards, I found myself unsure what to hope for. Either she progressed, in which case she would have only seen two doses of treatment. But, what if it worked? Now that she signed an ABN, she might be responsible for payments in excess of this. Would she be able to afford it? Would I be forced to discontinue a drug that was working because she could no longer pay for it? I will be honest — these competing thoughts did keep me up on more than a few nights.

Although solutions are difficult and not readily apparent, we must do more to engage in discussions of cost, care, and novel treatments. As with other areas we routinely care for alongside our patients, we must not shy away from evaluating  financial health. We can do this by providing context on drug costs, whether to inform decisions about what treatment to try when multiple reasonable options are present, or, as in my patient’s case, by being upfront about the financial risks associated with off-label use of new agents.

Regardless, I hope care patterns do not devolve into a system that finds it acceptable to offer newer (read, more expensive) treatments only to those able to afford them. I’d like to believe it won’t, but it will take a concerted effort on everyone’s parts to ensure this doesn’t happen.

Somehow, the road towards the cure to cancer should not be paved in our patient’s financial despair. I have to believe there is a better way.

For more information about this topic, I point readers to an excellent article by Rashma Jagsi in the Journal of Clinical Oncology.

In addition, read  about my colleague and friend, Dr. Neel Shah’s nonprofit foundation, aptly titled Costs of Care.

Thanks to Yousuf Zafar and Laura Sullivan for their feedback about this piece. Friends and colleagues — both of them.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • NewMexicoRam

    And what chance of response was expected? $5000 per dose to gain another 6 months? Maybe you discussed that with your patient, but you didn’t indicate that.
    This is the problem I have for high cost care that has little benefit. Everyone wants the gold treatment, but everyone wants someone else to pay for it.

    • drdondizon

      Hi New Mexico Ram: I am glad you picked up on that. Yes- part of what needs to change is how clinicians define “benefit”. That is not so simple, and is something we confront both nationally, within our professional organizations, and in private encounters with patients. The magnitude of benefits are judged best by the person undergoing treatment I think. If one of my patients wants to live long enough to see her son marry in 3 months, then isn’t that worthwhile? What really struck me is that when fiscal matters came into the conversation, it also prompted a much more specific and defined discussion of what I meant as “benefit”. Some who reviewed the data declined the treatment, feeling as you state- it’s “not worth that”. Others, who had a goal in mind usually, took treatment, even though it cost so much. Instead of trying to universally define benefit, we need to look more closely at the other side, which is far more complicated than just cost; we need to look at effectiveness (ie, does it keep people out of the hospital? can they work while on treatment?) and overall utilization of health resources associated with that drug.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    Yes, there must be a better way…. I am very happy that someone is searching for one….
    I would think it should involve physicians insisting that payers honor their prescriptions, whether on or off label. Sometimes it will cost more, other times it may cost less, as in the recent furor over Lucentis…
    I don’t think it should entail screening patients for ability to pay before making recommendations, and it should not include considerations for societal benefits, or all the other righteous rhetoric floating around now.
    We can keep telling ourselves that this is “interplay between goals and preferences and evidence”, viewed through this or that “prism”, but it isn’t. It is the interplay between having no money and being really sick, in cruel times, and interplay is not a term I would use in this context.

    I can understand the argument that you get only as much care as you can or are willing to pay for (@NewMexicoRam:disqus). I can even appreciate the candor and honesty… What I cannot accept is the obfuscation coming from people who want to accomplish the same thing, but without actually saying it out loud. So much for “transparency”.
    Here is more of my sound and fury :-) http://onhealthtech.blogspot.com/2014/04/our-cheap-and-productive-lives.html

    • NewMexicoRam

      Someone has to think about what society is doing with our money. Obviously, no one has yet because we as a nation are $17 trillion in hock.

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        You may be right, but this necessitates some honest public debate (which we will never have). I happen to think that there is enough money funneled out of the system to appropriately care for most people if we were not robbed by CorpMed and subsidiaries. I may be wrong, but at the very least, I would like to see that type of waste addressed first, before we classify some people, in some circumstances, as wasteful to society.

    • drdondizon

      Dear Margalit: I disagree. If this were true, then guidelines-based care would be the only paradigm for treatment. Fall of the guideline, treatment isnt provided- or paid for. This is not what I want for medicine, or for cancer care. There must be room to look at goals and preferences; we cannot be blind to what our patients’ experiences are when we review the evidence. At the institutions I’ve worked in, we bend over backward attempting to provide for treatment coverage and for that, I am thankful. I can see your points, however, that healthcare is more “available” for those who can pay, not for the poor. These types of disparities are alarming and we do need to think about how to address them. But, the same goals and preferences discussions are relevant for the rich and the poor patient. Each deserve a say in how their treatment is administered.

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        Of course they do, Dr. D. I would go farther and argue that the patient should be the final decision maker without exception and without financial considerations.
        I understand that poor folks have to draw lines all the time, be it housing, or education or even food. I don’t believe we should institute official policies, or special guidelines for how we draw lines when it comes to life itself on their behalf.
        But most of all, I don’t believe that we, as a society, should ask doctors to quietly do the “dirty work” here. I want to see politicians stand up and run on a platform of restricting “benefits” for the poor, and I want that to be a national debate out in the open. I am curious to see how the traditional parties align with such a hellish argument.
        I guess I trust the American people to do the right thing, or at the very least to oppose the wrong one.

  • Patient Kit

    As a recent ovarian cancer survivor myself (I just reached my 1-yr cancerversery with no sign of recurrence so far), I have lived the last year much more terrified of our healthcare system than of my cancer. In a system that treats patients with serious illness like cancer according to how much they can afford to pay, the road to a cure for cancer is already paved in patients’ deep financial despair. Let’s not forget that, until 4 months ago, insurance companies routinely denied cancer survivors coverage for their pre-existing condition. The fact that cancer treatment in this country is such an economic class issue makes me both very sad and very angry. It’s nothing short of obscene that “you get what you pay for” is an accepted attitude toward cancer treatment. That has to change.

    • Lisa

      At some point though, society as a whole has to consider the cost of treatment for end stage diseases. Is it right to treat a patient, at great expense, when it won’t extend their lives for more than a short period of time?

      I think everyone should have the same access to treatment, but there is a point when treatment should stop. Even if you can pay for it.

      • drdondizon

        Agree, Lisa. But, in a country where individual liberty and freedom is cherished and valued, the dilemma is where to draw the proverbial lines. It’s always someone else’s problem, that is, until it affects us personally. That mindset has to change too. DSD

        • Lisa

          It has affected me personally, I’ve been diagnosed with cancer; my mother died of cancer. I have a very good idea of where to draw the line.

          Individual liberty and freedom are not constructs that apply to most people in this country whose choices are constrained due to lack of money.

    • drdondizon

      Hi Patient Kit, thank you for commenting and I apologize I havent commented back. I like to believe my ability to prescribe the best for any one patient is not influenced by issues beyond the walls of my office or examination room, but more and more, I see that I can no longer be as naive, or ignore the financial constraints treatment places on patients and their families. I think we need to work together to find the solutions that will work. I too fear a day when medical care devolves into a two-tier system. All patients deserve the best care possible. We just need to remember, best does not always mean most expensive. DSD

  • Jennifer Jonsson

    A friend of mine who is a Buddhist lay leader has refused conventional treatment for his cancer, mostly because, well, he’s a Buddhist lay leader and the idea of chemo is sort of antithetical, but I can’t help but think cost is probably a factor too. No idea if he has insurance.

    • drdondizon

      All we can do as providers is give our best advice, based on best treatment practices, which (hopefully) are evidence-based. I’ve had patients refuse treatment as well- as long as I believe they are making a conscious decision and an informed one, who am I to say they should do it my way. DSD

  • drdondizon

    Hi Joanne, I would prefer not to comment on outcomes. I hope you understand. DSD

  • Lisa

    I wonder about the push towards expensive medication most of the time, even when I am not being cyncial. I think quality of life is more important than the length of life.

  • drdondizon

    Hi Christy- the fact that almost 20% of patients with cancer undergo chemotherapy within 4 weeks of death (S Kao, et al. Annals of Onology 2009; 20:1555) emphasizes the importance of the issue you raise. We clearly have to do a better job talking with patients earlier about the goals they have for the rest of their lives, even start referrals to palliative care earlier, given a randomized trial that showed early palliative care improved survival in patients with advanced lung cancer (Temel, New England J Med 2010; 363:733). If they had tested a drug that showed a survival advantage, then all the world would want it. We need to seriously think about what we are talking about with our patients.