Updated: Jul 8
A change from private insurance to Medicare threatened the affordability of David Chill’s cancer treatment. Here’s his story.
The High Cost of Living
In 2012, I was diagnosed with Stage IV Lung Cancer, and after a brief treatment of chemo, I entered Pfizer’s clinical trial for Xalkori at UC-Irvine. My success, along with others in the trial, helped to pave the way for Pfizer to gain FDA approval for this drug in 2016. I was told at the start of the trial that I could keep getting Xalkori as long as it was working for me. It’s been more than nine years, and it is still working for me. I still take Xalkori every day.
When the clinical trial for Xalkori ended, Pfizer was kind enough to waive my $2,400 annual co-pay, so I effectively paid $0 for Xalkori for many years. But I recently turned 65 and I am now on Medicare, and the rules have changed.
Xalkori is expensive. Very expensive. An internet search told me Pfizer’s retail price for Xalkori is $20,481 per month, or $245,772 per year. Medicare rules state that after the initial coverage period, the patient enters what’s referred to as the “Donut Hole,” which in my case required me to fork over roughly $7,000 in co-pay fees before qualifying for catastrophic coverage. But even with catastrophic coverage, and Medicare covering 95% of the cost, Xalkori will remain very pricey. For many drugs, 5 percent isn’t a big deal, but when a drug’s monthly cost is over $20,000, the patient’s monthly portion is over $1,000. There is no cap on a patient’s maximum out-of-pocket cost, so while Medicare does pay the lion’s share of the expense, my portion ballooned from $0 to nearly $15,000 a year. Efforts are being made to pass a law that will put an annual limit of $2,000 to $3,100 for patients’ out-of-pocket drug costs, but to date, that law has not passed.
When I was making decisions about Medicare coverage last year, my insurance broker guided me through my options for getting Plan D drug coverage. All of the plans had very steep co-pays, and there were no good alternatives, due to how the current Medicare laws are written.. We explored getting assistance for my Xalkori payments through other organizations, but I did not qualify financially because I am still working. I could have stayed on the private insurance plan I had before Medicare, but that was costing my family over $20,000 a year in premiums, which did not make it a viable choice. Essentially, the money we saved by going on to Medicare would now be offset by the money going toward co-pays for Xalkori.
Part of the problem is the way Medicare’s thorny rules are written. Medicare is, by law, not allowed to negotiate prescription drug prices with pharmaceutical companies. Pharmaceutical companies can set prices as high as the market will bear. The government has essentially no choice but to cover medications at whatever price the company chooses. As such, Medicare patients are not eligible to get a discount. They pay retail.
Note that this is not just Pfizer; they are just one of many drug companies that are simply playing by rules that have been established.
In January, I contacted Pfizer’s Oncology Together program to apply for a new co-pay waiver. My application was rejected. Because I am still working, my income exceeds the threshold Pfizer established for waving the co-pay for Medicare recipients.
At the time my application was rejected, Pfizer immediately invited me to appeal the decision with their Patient Assistance Program. They asked me to provide evidence that my family’s regular expenses lowered my discretionary income to an amount that Pfizer could justify a new waiver. I filled out the forms and have been waiting for over a month for a decision. I explored receiving assistance from charitable foundations, but again, my current income exceeded their threshold, so they were not an option.
I am of two minds when it comes to drug companies. On the one hand, I am eternally grateful to Pfizer for developing this drug. Without Xalkori, it is unlikely I would have survived lung cancer for close to ten years following my 2012 diagnosis. For me, it was a miracle drug, and I have Pfizer to thank for all the extra time. I was able to see my son graduate from college, and I established a new career as a novelist. But turning 65 threw a wrench into my blissful experience. The cost of Xalkori is extraordinarily high, and even with Medicare and the best drug coverage available, my co-pay became extremely high as well. Drug companies are not altruistic; these pricey drugs that are developed to manage long-term conditions also can create profitable long-term customers.
At some point I will stop working, so my income will allow me to more easily qualify for financial assistance. Or at some point, the drug might stop working for me, and I’ll need to move on to another treatment. I’m not looking forward to either of these scenarios, so I guess I’ll do what I’ve been doing since I was first diagnosed with lung cancer. Take things one day at a time, with the knowledge that things could be worse. I also know that things could be better, but short of Medicare placing a cap on patients’ out-of-pocket costs, or Medicare being allowed to negotiate prices with drug companies, the path toward getting access to critical drugs will be a long and winding one.
See our Managing Finances page for guides about financing cancer care.
About five weeks after I sent in my appeal to Pfizer, and a few days after I wrote this essay, there was a knock on my door. The UPS delivery guy handed me a small package in an unmarked envelope with a return address somewhere in South Dakota. When I opened it up, there was a one-month supply of Xalkori. The label on the bottle indicated it was from the Pfizer Patient Assistance Program. I did not receive a letter or a phone call about this until a week later, so my appeal was approved. One day at a time. This was a good day.
David Chill is a ten year survivor of ROS1+ non-small lung cancer, and a best-selling novelist known for his Burnside Mystery series.