Martha (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.