When I was 12, my father died of a cancer-like condition called aplastic anemia. That was certainly a major factor contributing to my decision at a very early age to pursue medicine and what got me interested in doing something to help patients with cancer.
I saw the agony that he went through and my mother went through. More recently, though, I’ve seen patients and their families experience a different kind of agony – that of heartbreaking financial hardship due to skyrocketing health care costs.
I grew up in a blue-collar household. My father worked for the New York Central Railroad, my mother worked as a cashier at a retail store and I had to work from an early age. The only reason I could go to college, much less medical school, was because New York State had a scholarship program that I was able to enter. We were poor, yes, but we didn’t feel like we were and had what we needed to live.
Sadly, that’s not the case for many patients today.
’Years ago, oncologists never talked about costs. Patients rarely brought the issue up because they had the means to pay for their treatment, and the drugs they needed didn’t cost tens of thousands of dollars. They were insured in many cases and if they weren’t, we could either write it off as an institution or appeal to the drug companies under compassionate use.
I’ve practiced oncology for more than 30 years – in the Southeast, the Northeast, the mid-Atlantic area and now the Northwest – and I’ve been caring for cancer patients long enough to see a trajectory. In the ’80s, the ’90s, even in the early 2000s, it was almost unheard of for patients not to be able to get drugs because they couldn’t afford them.
The financial distress to the extent we’re experiencing now is really a modern development.
A big part of this is due to the rise in drug prices, which is obscene in my perspective, driven by greed and fueled by a system that allows this to happen. But that’s just the most blatant example. Hospital costs have also gone up extraordinarily. As hospital mergers occur, many have no competition in their region, so they’re able to jack up the prices. There’s also increased cost from all the new high-tech imaging, which is very, very expensive. That’s why programs like ASCO’s Choosing Wisely strongly pushes for less indiscriminate testing, including advanced imaging, which seems to be happening in some instances.
And overlying all of this is the desperation that patients with cancer and their families feel when they receive the diagnosis and are given the treatment options.
Another big driver of rising drug costs has to do with constraints on CMS, the Centers for Medicare & Medicaid Services, which oversees Medicare and Medicaid. Unlike in every other developed country in the world, CMS isn’t allowed to negotiate drug prices with drug companies. They have to pay the full price. In other countries, the health system negotiates with drug companies to get much lower prices because they insure huge numbers of individuals and in some cases, the entire population. They’ll simply say “No, we’re not going to pay that” and the drug companies have to bend or else they can’t have their drug on the market.
But as colleague Dr. Scott Ramsey and I wrote in our JAMA Oncology editorial, changing this policy is complicated. It wouldn’t be “free” – it would entail tradeoffs that might reduce patient access to some new cancer medications. As a society, we literally have to pick our poison.
Just as with cancer, there are no easy answers.
Last week, there was a congressional hearing on prescription drug pricing, and I almost had tears watching the videotape of Martin Shkreli refusing to testify about Turing Pharmaceuticals’ infamous price gouging of the drug Daraprim. Afterward, he tweeted about how our government representatives were "imbeciles." This guy has no place in the healthcare industry or any industry. It’s just incredible.
But here’s the saddest thing. Shkreli may be the worst of the worst, but he is not alone. There are others who are just as bad even if they’re not as transparent about their disdain for humanity. Unbridled greed is still at the bottom of what they do. They’re thinking about their investors, their personal profits, and not about the patients that they are making these drugs for. I have to believe that most of these individuals haven’t had a personal experience with disease or seen the impact that these absolutely crazy prices can have on the lives of cancer patients and their families.
As an oncologist, I’ve had patients delay or actually stop treatment because of these prices. Sometimes, it’s a patient who started treatment elsewhere without a discussion of the cost and then they receive their bill and ask, “What am I going to do? My family’s at risk here.” Patients have stopped treatment because of side effects before, but now they’re saying “I can’t afford this.” I’d never seen this in the past.
Their families will say “We’ll sell the house, we’ll do everything, we’ll beg on the streets,” but the patient will say “No, I won’t have my illness do this to my family. I won’t have this be my legacy.” It tears at the patient and tears at the family and, ultimately, the patient makes the decision whether to continue on or stop.
And some of them are stopping and dying as a result. That’s why I’ve taken a stand with many of my colleagues around the country, trying to call attention to these pricing issues and how unsustainable and devastating they are to our patients.
I get very close to my patients, which isn’t always recommended, but it’s hard not to from my perspective. My patients are my heroes, and I try to feel to some extent what they’re experiencing because conveying recommendations to them without knowing what they’re feeling and experiencing can be very difficult.
Every time I walk over to Seattle Cancer Care Alliance, I talk with them. Sometimes I get behind because I’m spending too much time with them. But I have to spend that time, I have to delve deeper because I don’t want a failure to address the physical, emotional, and financial issues a patient is facing to come back to haunt me.
Talking about money as it relates to cancer treatment is not easy. You want the patient to know that your decisions are based on what is clinically best for them, which is true. The challenge is bringing up cost at the appropriate time and in the appropriate way. It’s not usually a conversation you have on day one but something you weave in relatively early on. And it’s good to remember that it’s not one conversation, but a series of ongoing discussions.
Where this discussion is most imperative is when there are treatment options. Drug A and Drug B may both put you into remission and both have different side effects, but Drug A may cost you five times what Drug B costs. So guidelines might recommend Drug B, but only because you get the same benefit from it and you get it at a reduced cost. There are certainly instances where there’s really only one drug or treatment that is safe and effective. But many times there are choices between drugs or regimens which as far as we know are equally efficacious but have significant cost differences. It’s important to explain that.
It’s also good to know what a patient’s out-of-pocket cost is going to be. This can be very complicated because it depends on their insurance and what specific plan they have with that carrier. That’s why I try, as I develop a relationship with patients, to get them to talk about what bills have come back to them. Because I won’t necessarily know unless I ask.
As clinicians, we need to know what’s going on and how it directly impacts our patients, but at a societal level we also need to find a solution to this and we’ve got to find it quickly.
You’d think just appealing to the CEOs of these pharmaceutical companies would yield a result, but that doesn’t seem to be working. Their rationale, of course, is the cost of research and development for new drugs is very high. And I get that: you could spend billions on a drug and still have it fizzle. But there’s got to be a balance. They’re not just recouping their development costs and making a reasonable profit. They’re making huge amounts of money in some instances. And most of the money goes into marketing and advertising, much of which is directed at patients through television, the web, and other media.
R & D is very costly, yes. But if they’re really concerned about sustaining their R & D program and charging fair prices, they might think again about where they’re spending the money beyond the laboratory.
I’m sure the investors love it when they get these big checks at the end of the year, but those checks represent people’s lives.
At HICOR, we’re looking at the science side of all of this – the numbers, the metrics, the measures, the stacks and stacks of health-economic data. Our research has shown us that cancer patients are more than 2.5 times more likely to go bankrupt and, when they do, they’re 80 percent more likely to die.
When I sit down with my patients, I can’t help but see the issue in another light.
I remember a patient I had back East who was receiving a targeted therapy, a very expensive therapy, but one that was approved by guidelines and by the FDA. But her insurer would only cover so much of the cost and she was left with a huge portion to pay out of pocket. So much that she finally said, “I cannot continue on this. I have no way of paying for it.”
And so she stopped. And she died. That’s as close to criminal as I can think of – a calamity that should never happen to those in this situation in the world’s richest economy.
People don’t know what to do. They’re crying; they’re desperate. It is literally life or death for many of them. And yet pharmaceutical companies and the insurance companies are unfettered and unbridled. Once the FDA says a drug is approved and clinical guidelines say it’s an appropriate treatment, I see no justification for saddling struggling patients with unmanageable treatment costs.
But that’s what’s happening. Patients are doing whatever they can to live an additional few years, even if it’s financially devastating. Or they’re saying, “No, I can’t and I won’t do that to my family.” They’re stopping the treatment that might prevent a recurrence. They’re stopping a treatment that will probably prolong their lives or even cure them. It’s catastrophic.
It’s not cancer but the cost of cancer care that’s killing them. And when that happens, you can’t sleep at night.
Dr. Gary Lyman is a Fred Hutch public health researcher, breast cancer oncologist, and along with Dr. Scott Ramsey, co-director of the Hutchinson Institute for Cancer Outcomes Research. Click here for more information on HICOR's work. To register for their upcoming Value in Cancer Care summit (free to patients), click here.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine, and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.
The views expressed in commentaries belong to the author and may not necessarily reflect the views of Fred Hutchinson Cancer Research Center.