By Libby Watson for Splinter
My mother has lung cancer. At the end of last year, she began feeling breathless and tired, struggling with walks around the village I grew up in; in March, we found out a tumor was to blame.
When she was diagnosed, I found myself constantly writing about it in my head in a distinct Writing Voice. All thoughts about it came into my head already written in online essay-ready sentences—about how fucking unfair this was; what it was like being back in my childhood bedroom for the worst reason; memories of mum’s mum, the indomitable Nana, dying of cancer; along with much, much darker thoughts. Maybe it was because I had recently read a beautiful article on Pitchfork about the songs that resonated with the writer when her mother died, or because the constant churn of Twitter and my job have conspired to ruin my brain. Whatever the reason, my inner monologue was a running personal essay, with some good lines and some awful garbage I’m glad I never committed to the page.
This is not that essay. It is not about my feelings, which are what I selfishly feared would be all that remained if I found myself alone in the world, far too soon. My worst fears were not realized. Mum is getting better.
Scans show that her tumor has shrunk by half after 12 weeks of treatment. She can walk around the village just fine now. She canvasses for the Labour Party and, last week, went straight from an immunotherapy appointment to protest Donald Trump’s visit to the UK.
This improvement has come partly because my mother’s type of cancer turned out not to be the more aggressive kind—it’s non-small cell instead of small cell—and partly because the treatment she’s receiving is working wonders.
Because she is lucky enough to live in Britain, she receives this life-saving treatment for free. There are no deductibles, no wrangling with insurance companies, no GoFundMes, no co-pays, no prior authorization or surprise bills, no billing at all. This is because of the National Health Service. She walks in, gets the drugs she needs, and goes home. Every three weeks, the NHS gives her life. For free.
Immunotherapy is a relatively new and impressive cancer treatment. In effect, it trains your body’s immune system to fight your cancer on its own, and usually brings far fewer side effects than more common treatments like chemotherapy and radiation. Not everyone can receive immunotherapy; it’s currently only recommended for people whose cancers have certain proteins that indicate it will respond to the treatment. As with chemo, some people get side effects that are so severe they have to stop treatment. Mum is incredibly lucky to be eligible for the treatment, to be responding well to it, and to be experiencing almost no side effects so far. (These are things that can always change on a dime.)
Just days after her treatment started, I got a push alert from the New York Times: “Lung Cancer Patients Live Longer With Immune Therapy,” it read. The piece was about a new study showing how remarkably beneficial the drug Mum is receiving, called pembrolizumab or Keytruda, can be. It was full of quotes that helped me breathe again. The chief of medical oncology at the Yale Cancer Center told the paper, “immunotherapy has the ability to cure. I lead the Yale lung team. We have patients on these immunotherapies alive more than eight years.”
The story also cautioned that not all patients respond to the treatment and provided numbers about survival rates that both Mum and I purposefully avoided, but in the absence of a visit from the Ghost of Libby Future letting me know that she’d be alive for years to come, this was as good as it gets. It lifted me from a dark place to a still gray but ultimately bearable one.
But there was another part of the piece that stuck in my mind: the cost of the treatment, which the Times estimated at “more than $100,000 a year.” Reuters puts the list price of Keytruda, which is developed and sold by Merck, as $13,000 per month, or $156,000 per year. This is almost exactly $100,000 more than the median annual household income in the United States. In the UK, you don’t even know the price of the drug you’re getting. In the U.S., it’s your responsibility.
Almost no patients end up paying the full list price, but they will still pay deductibles and co-pays on the way. (For patients on Medicare and Medicaid, the rest of the tab is being picked up by you and me.) The average deductible in the U.S. is $4,358 for individuals, plus an average premium of $321 per month. If you’re receiving a $13,000 treatment once a month, and you haven’t hit your deductible yet, you might have to pay the whole lot at once. If you get cancer in December and have treatment in both December and January, when your deductible resets, you might have to pay it twice.
This holds true for cancer patients receiving other kinds of treatment, too; cancer treatment is devastatingly expensive. So it should come as no surprise that some cancer patients are forced to skip or delay treatment because of the cost, as NPR reported last year:
John Krahne received alarming news from his doctor last December. His brain tumors were stable, but his lung tumors had grown noticeably larger.
The doctor recommended a drug called Alecensa, which sells for more than $159,000 a year. Medicare would charge Krahne a $3,200 copay in December, then another $3,200 in January, as a new year of coverage kicked in.
For the first time since being diagnosed 10 years ago, Krahne, 65, decided to delay filling his prescription, hoping that his cancer wouldn’t take advantage of the lapse and wreak further havoc on his body.
Yes, even patients who have Medicare can end up skipping necessary medical care because of the cost. Medicare drug costs are skyrocketing, and the federal government is still legally prohibited from negotiating with drug companies to lower prices for those enrolled in Medicare Part D (which covers drugs you get from the pharmacy). For those on private insurance plans, it’s even worse: 40% of plans are high-deductible now, meaning patients have to spend thousands of dollars out of pocket before their insurance company finally ponies up.
According to a report by the American Cancer Society Action Network, cancer patients paid $3.9 billion in out-of-pocket costs last year. The group’s experts constructed three scenarios of “typical” patients with different kinds of cancer at various stages with the standard recommended treatment plans. All of them had significant out-of-pocket costs, particularly on an individual market plan (not employer or government-provided): Those patients ended up spending $10,114 on cancer care and premiums alone that year. Do you have $10,114 to spare each year?
This isn’t to say the NHS is perfect. I went home a week after Mum was diagnosed and was there through the worst bit of this process, before we knew anything other than that it was cancer. The effects of the Conservative government’s steady financial squeeze of the NHS quickly became evident. The process of getting Mum’s full diagnosis was several weeks long, and at every stage there were delays—delays which I feared were killing her. I went with her to an appointment with her cancer specialist at our local hospital. He spent most of the time on the phone with a bigger hospital in Oxford trying to figure out when her scans would happen, whether anyone had actually booked them, and why no one seemed to know. Sitting in the dark corridor outside the doctor’s office, in the hospital where I was born, I couldn’t help but notice the marks on the walls. Everything looked the same as it did when I was 11.
All the same could be said for patients in the privatized American healthcare system if they’re middle or low-income. There are delays in care in the U.S., too—often because of cost—and the average time for starting cancer treatment increased from 21 days to 29 days between 2004 and 2013. In my personal experience getting treatment for much less serious illnesses, I’ve waited months for appointments with doctors. Hospital facilities in the U.S. are not uniformly shiny and new, despite the rewards promised under a free market. And, of course, some of the best hospitals in the world are here, but they’re far from accessible to all. Even the trauma hospital of choice for Washington, DC, where the people with the power to change all this reside, has had problems with sewage leaking down the walls and flies in operating rooms.
Preventative care also remains so cost-prohibitive for many Americans that they can’t afford regular doctor visits, instead heading to the ER for conditions that could have been treated better by a primary care doctor. In more extreme cases, patients end up attending free clinics erected outside. The Washington Post described one held in a fairground in Virginia, with “sheets hung from clothespins for privacy; giant fans pulled hot air through buildings intended for livestock shows.”
There are myriad problems with American healthcare that go beyond the insurance-based system. The fact that Keytruda’s list price is so high is objectively insane, whether or not the government ends up paying for it—but the NHS was able to negotiate an undisclosed discount for the drug, and a single payer system in the U.S. could similarly improve our negotiating power on drug costs. It does not “cost”—in terms of the actual money required on the company’s part—$13,000 to produce and ship a vial of Keytruda, but that’s still the price they charge. Both Britain and the U.S. desperately need to reform their welfare systems so that having to quit your job because you’re too sick to work doesn’t put you in poverty, too.
Instituting single payer or Medicare for All in the U.S. wouldn’t be simple or an overnight success, and the fight for healthcare justice wouldn’t end then, either. It would require constant and tireless advocacy to shape the system in a way that is equitable and provides high quality care for all. But for all the criticisms and concerns, in good and bad faith, about what a single payer healthcare system would look like in America, this is an unavoidable fact: The cost to receive life-saving treatment in the U.S. is high, and Americans spend a staggering amount on healthcare each year, far more than other industrialized countries. People die here because they can’t afford treatment; that doesn’t happen in other countries, despite the U.S being the Greatest Nation on Earth, copyright 1776. There is absolutely a better way.
I don’t know how long I have left with Mum. No one really knows; the cruel joke of life is that it always ends, and if you’re lucky enough to have your mum as your best friend, you’re also basically guaranteed to have to live a big chunk of your life without her. But she’s only 63. I thought I’d have at least another 20 years with her, and I know despite the amazing results so far, the cancer will likely cut into our time together.
But our NHS, our beleaguered and besieged national health service, is giving us more time together, and there is no grim bureaucratic hand reaching out to demand a payment for that time. There is no lingering dark cloud of financial worry threatening that treatment would end if she couldn’t pay. It has given her the gift of more life, and given me and my family the gift of living free from constantly worrying and planning for an imminent loss. It has given me the rare gift of being able to put aside, for a while, the thought of what’s coming eventually, whether it’s next year or in 10 years. We get to have more birthdays and celebrations with Mum without forcing a smile or ending early because she can’t breathe. We get to relax and have a cup of tea together, and laugh, and watch stupid telly. We get life, for free—as it should be.
It is beyond unjust that this same privilege isn’t available to millions of equally deserving families in the U.S. It is criminal. No one should have to pay to stay alive; no one should have to turn to a crowdfunding website, or go back to work to pay for their treatment, or simply get sicker and die because they can’t afford any other option. Everyone deserves what Mum and I have.
It’s easy to get used to a terrible system and forget, or purposefully ignore, how crazy it is, because the truth feels too outrageous. It is vital that we don’t shut out this painful reality. Be outraged at this sick system. Be livid at the politicians who attempt to smear the NHS as a means of denying the same right to live a long and happy life to all Americans. Shout from the rooftops the names of politicians who lie about the cost of single payer to please their donors in the insurance industry. Be steady and strong in your fight for a just healthcare system, whether you’re going to marches and rallies, joining organizations that promote it, or just reminding your friends and family that it doesn’t have to be this way. It’s what Mum would want.