Preparing Patients for Toxicity—Physical and Financial

Preparing Patients for Toxicity—Physical and Financial

Yousuf Zafar, MD, MHS

May 24, 2013

Everyone’s talking about health care costs these days. The presentations usually start with a chart of rising health care expenditures, the tip of the line pointing skywards. Next come exhaustive (and exhausting) tables, more charts, all punctuated with a final shrug of uncertainty from the speaker: what’s the solution to rising costs? Of course, there isn’t just one. But in the morass of data, we can lose the voices of the patient and her doctor. Even if we haven’t solved the healthcare cost crisis, there must be something we can do today for patients suffering under this financial burden of out-of-pocket cancer care costs (sometimes called “financial toxicity”).

Patients may look to us—their oncologists—for the answer. As an oncologist, I have training in internal medicine, hematology/oncology, and even dedicated training in delivering bad news. So, I can, with some skill, inform my patient that her cancer is growing, but I have little to no skill in informing my patient about the thousands of dollars in out-of-pocket costs she will incur from treatment. In addition to the ins and outs of medical oncology and supportive care, are we also expected to gauge our patients’ financial situations? And where do we find the time in an often emotional visit to talk dollars and cents?

These questions are reasonable. Colleagues have told me that their patients want to spend precious appointment minutes talking about treatment plans, not bills. Patients have told me that it’s not their doctor’s job to consider costs of care, or worse—they are embarrassed to bring up costs with their doctor. The rise in health care costs might be slowing, but families are paying more out-of-pocket. Yet, patients and doctors are ill-prepared to have the discussion. What we are left with, then, is a disconnect.

So, what do we do when patients tell us their health care bills are mounting? Or ask for less expensive prescription medications? Or ask for less frequent visits to save on travel money? These are all questions I have been asked in clinic, and I am sure many of you have been asked similar questions. I don’t think it’s reasonable to expect that we understand every patient’s insurance status or the cost of every intervention (especially with the current state of cost variation and lack of price transparency. The answer may lie in patient preparation.

Here’s an example: as a gastrointestinal oncologist, I use a lot of oxaliplatin. I can’t do a lot to prevent the cold sensitivity and neuropathy that oxaliplatin causes, and those symptoms are experienced to some degree by almost all the patients I treat with the drug. But I, the nurses in clinic, our pharmacists, and the nurses in our treatment center spend a great deal of time educating patients on neurotoxicity. We tell them when to expect it, and we teach them how to lessen the sensation. Eventually, I might have to lower the drug dose or even discontinue the drug if the toxicity is too severe. I am fully capable of discussing a physical toxicity with my patients that I cannot necessarily prevent. Most of us who use this drug wouldn’t forgo this critical patient education just because we can’t avoid the toxicity. And most of us who use oxaliplatin would agree that the education is helpful in reducing our patient’s suffering. So how is this discussion around a physical toxicity different from a discussion around financial toxicity?

It shouldn’t be different. If the treatment we prescribe can result in undue financial burden, then we should address the financial burden before it results in patients spending savings or declaring bankruptcy. Even if we don’t have all the answers for how to reduce treatment-related costs, having the discussion—acknowledging the problem—might ease patients’ concerns.

I listen to lots of talks and read lots of papers on the cost of care; my eyes glaze over at the charts and tables. But the intimidating figures shouldn’t prevent me from preparing patients for financial toxicity, for thinking of it as another side effect of treatment in an ever growing list.


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Robert Goldberg

May, 27 2013 8:55 PM

New cancer cures insurers won’t cover
Last Updated: 11:42 PM, May 8, 2013
Posted: 11:02 PM, May 8, 2013
Advances in cancer treatment are saving lives and cutting health-care costs. But because many health-insurance plans haven’t caught up with the times, nearly half of all cancer patients are forced to choose between the treatment that could save their lives — or one that’s paid for.

John Rykert had been battling advanced basal-cell carcinoma for two decades by cutting out the tumors as they appeared. In 2009, after 20 surgeries lasting 10 hours each, Rykert’s doctor said that the cancer had spread so far that the only option left would be to carve out half his face. But then Rykert was given Erivedge, then an experimental drug, which shut down the genetic mutation causing his skin cancer to spread.

Erivedge shrank Rykert’s tumors almost immediately and shut down the skin cancer. He suffered some hair loss and muscle cramps, but four years later he is alive.

Such stories are increasingly common. As scientists find the shut-off switch for specific cancer-causing genes, they can make pills that go after cancers cells and block the specific biological mechanisms that produce them.

These pills are not only less toxic than conventional IV chemotherapy, they’ve turned once-incurable cancers such a myeloma, breast cancer and even pancreatic cancer into manageable diseases.

But insurance coverage hasn’t kept up with medical innovation. Instead, most insurers follow Medicare’s 40-year-old approach — which covers IV treatments generously, capping out-of-pocket costs at about $3,000, but charges the patient up to 50 percent for oral cancer drugs, even when they’re the only treatment that will work.

And targeted cancer pills such as Gleevec, Tykerb (for breast cancer) and Revlimid can cost tens of thousands of dollars a year. Ironically, that’s not much more expensive than many IV cancer treatments; the coverage cap isn’t even about saving money.

Hence, when Robert Adler’s multiple myeloma returned after his IV chemotherapy, his doctor recommended the pill Revlimid. While his insurer had paid all but a few hundred dollars of his previous treatment, it saddled him with out-of-pocket costs of $42,000 because Revlimid counts as a pharmacy benefit.

Again, nearly half of all cancer patients are in plans that force them to choose between a treatment that’s paid for and one that could save their lives.

Sadly, several studies show, 25 percent of patients don’t even fill their initial prescriptions for cancer pills when the co-pays exceed $500. Even more will stop or interrupt treatment.

Neither Medicare or private health insurers are closing the gap between coverage and innovation. Instead, a survey of plans conducted by the Zitter Group found that insurers “recognize that oral therapy cost-sharing requirements actively encourage patients to use infusible products.”

This is akin to paying for an iron lung machine but not a polio vaccine.

To address this innovation gap, Rep. Brian Higgins (D-Buffalo) has introduced the Cancer Drug Coverage Parity Act, which would require health plans to equalize co-pays for all forms of cancer care.

Again, these pills have meant huge progress in the war against cancer. Since targeted cancer therapies were introduced in 1993, the number of cancer survivors has more than doubled from about 6.8 million to 14 million today. That translates into 43 million added years of life — which Columbia University economist Frank Lichtenberg says added $4.2 trillion to our economy.

These new treatments are also saving money by reducing the need for hospitalization. If the number of cancer patients hospitalized had remained constant since 1993, we’d have spent $1.3 trillion more on cancer care. Meanwhile, the amount we spend on cancer medications (old and new) has remained 5 percent of total US health-care spending.

Being able to decode our genome to treat cancer is just the start of a total transformation of medicine — but most health-care “reforms” impede such progress. The Cancer Parity Act aligns how we pay for health care with the future of medicine.

Robert Goldberg is vice president of the Center for Medicine in the Public Interest.

Anees B. Chagpar, MD, MPH, MBA, MSc, MA, FACS, FRCS, FASCO

May, 30 2013 12:05 AM


Great blog!    It got me thinking about how little we, as clinicians, truly know about the cost of the therapies we prescribe.... but I also got to thinking that eradication is better than education -- particularly when it comes to pain, be it physical or financial.  While we educate patients about the potential toxicities of our treatments, we do so not simply to prepare them for an inevitable eventuality, but hopefully we also try to prevent these side effects as much as possible.  To simply warn of the sting of health care costs does little to take the hurt away…. which then begs the question, what are we doing to make it better? 

Don S. Dizon, MD, FACP

May, 30 2013 6:15 AM

Hi Yousuf, I share Anees' kudos for your great blog post. What I have found interesting about considerations of cost is how they might shift an oncologist's enthusiasm for one versus another therapy. I recall the enthusiasm some of us who treat gyn cancers had when the studies showing some benefits to bevacizumab for ovarian cancer were first reported. We had wanted to access bevacizumab for our patients, although it was (and still isn't) approved for ovarian cancer. At my prior instutition we struggled how to provide access yet not run into issues of insurance denials. That's where we as oncologists were asked to provide an Advance Beneficiary Notice (ABN) to all patients in whom we were recommending bevacizumab. The rationale was to force us, as oncologists, to inform patients that (a) treatment may not be covered and- here is the hard part- (b) in case it wasn't covered, the patient would be personally responsible for full payment.

it met with a lot of resistance because providers felt it wasn't right to deny patients a drug because of cost. However, in practice, I found that faced with the prospect of handing out an ABN, I was a lot more careful about when to prescribe it. Even more interesting was that faced with an ABN, I found most patients were not willing to sign it and face the risk of non-coverage (and a huge medical bill) when I could not "prove" there was a mortality benefit to treatment.

It was a sobering experience, but as meds become more expensive and patients live longer, perhaps it was a good experience to learn earlier than later. 

Hope to see you at ASCO, D

Yousuf Zafar, MD, MHS

May, 31 2013 12:19 AM

Hi Anees and Don, 

Thank you both for commenting. Anees, I totally agree that eradicating financial toxicity should be our goal. But perfect shouldn't be the enemy of the good--if we can't solve the problem now, we can at least educate and communicate with our patients about potential costs. The discussion--in some instances--might avoid insurmountable bills. But I see your point. We must work towards a solution.

Don, what an interesting story. Just goes to show that with skin in the game, patients can make rational choices when faced with marginal benefit/high cost. If ok with you, I might try to work it into my presentation at the HSR session on Monday.  

Nice to hear from you both, and I look forward to meeting you at ASCO!

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