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.

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.

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.

Dr. Gary Lyman is co-director of the Hutchinson Institute for Cancer Outcomes Research, which is working to reduce the economic and human burden of cancer for patients, families and society. A breast cancer oncologist, Lyman has had patients end treatment – and die – because of the devastatingly high cost of cancer care. "That tears at you," he said.

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.

’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.

Healthcare costs in the U.S. are increasing at a higher rate than other countries yet life expectancy and other patient outcomes are not improving.

Driven by greed

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.

A disdain for humanity

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.