There’s a box on my mom’s desk. It’s smaller than a shoe box, and unremarkable unless you know what’s in it, how it got there and why it represents several important things that are wrong with how we treat people with terminal cancer.
The box contains 28 doses of two drugs, or one “cycle” of treatment for her advanced cancer. These days it serves as a daily reminder of the price she paid to take the drug, both in dollars, and in degree of suffering. It also represents the massive waste in our medical system. And finally, it’s a tangible reminder of the failure of the drugs to deliver on their promise to slow down her cancer progression; it’s a box of unfulfilled hope.
My mom was diagnosed in August with breast cancer recurrence, 15 years after beating it the first time. After the first tumultuous weeks of tests and procedures, she settled into the recommended first line treatment for her type of cancer: a newly FDA-approved combination hormone therapy whose promise lies in its supposed ability to provide progression-free survival.
Progression-free survival
Progression-free survival is the length of time during and after the treatment of cancer that a patient lives with the disease, but it does not get worse. For a person with a terminal cancer diagnosis, there’s tremendous hope in the words “progression-free”. It means that the cancer is controlled and at least temporarily unable to continue taking up residence in more organs and bones. The idea that the cancer can be slowed down enables the person to hope for more days.
Terminally ill people will gladly accept the implicit assertion that lack of cancer progression equates to longer survival and more good days.
But progression-free survival hasn’t been proven to be linked to two important outcomes most patients are interested in: overall survival and quality of life. Lack of progression of breast cancer does not translate to longer overall survival. In addition, progression-free survival may not be survival marked by high quality of life; treatment of cancer always comes at a cost in the form of side effects that range from minor to life-altering.
Despite the absence of data about overall survival and quality of life, the FDA approved the new combination drug treatment based on evidence about the progression-free survival of less than 700 women. Just a few months later, my mom’s oncologist recommended it as the first line treatment.
The out-of-pocket costs of treatment
Before leaving the oncologist’s office full of hope, my mom asked, “How much will this treatment cost me?”
As she walked backwards towards the door, the oncologist said she didn’t know, but my mom’s Medicare coverage and her supplemental Part D plan would cover it.
In her defense, her oncologist likely doesn’t (and can’t) know the cost; my mom’s out-of-pocket expense for the treatment is determined by her specific insurance benefits and whether she’s in the “coverage gap” of her Part D plan.
And there’s our next problem: the lack of discussion about the out-of-pocket cost of cancer treatment when making treatment decisions. While we discussed the potential side effects of the treatment and the bi-weekly labs and other tests my mom would need to monitor her heart and liver function during treatment, the topic of the out-of-pocket cost of this treatment was never brought up by her oncologist. Though the American Society for Clinical Oncology recently published guidelines recommending oncologists discuss cost of treatment and financial stress with patients, my mom’s oncologist never addressed or even acknowledged this, even when my mom asked her directly.
Despite her anxiety about her monthly out-of-pocket costs, and their cumulative effect on her savings if she was going to take this treatment for many months, my mom chose to start treatment. We learned that my mom’s out-of-pocket costs would be enormous, and that she didn’t qualify for any patient assistance programs. But that was after my mom had agreed to the treatment plan.
The cost was a bitter pill to swallow, but not as bitter, it turns out, as the treatment would prove to be in the end.
The other costs of treatment
My mom came to own three “cycles” of treatment but was only able to take two. She was incapacitated by the severe side-effects of the treatment, including liver toxicity. As the second cycle drew to a close, my mom was spending most of her time in bed; there were no “good days” to be had.
And that’s when the specialty pharmacy called to tell her it was time to order her next cycle. That is how she came to pay for a box of medications she ended up not being able to use.
That box is now on my mom’s desk, a tangible reminder of the immense waste in our medical system.
Waste in the healthcare system
After stopping treatment, my mom got a “holiday” from treatment while her liver recovered. She started feeling better as the side-effects of treatment waned. She was able to enjoy spending time with family and friends. And she decided to figure out how to return or donate this very expensive box of medications to someone who could benefit from it. She tried every avenue she could think of, including calling the drug manufacturer (ironically, a pharmaceutical company where she previously worked). Unfortunately, no one would accept the unused medication.
That box on her desk is a waste of precious resources—a waste of her money, for sure, but even worse is the fact that we literally have no choice but to throw away thousands of dollars worth of treatment that could help another person. Is this the best we can do?
Cancer Progression
My mom’s next scans revealed more bad news: the two cycles of treatment she took didn’t slow her cancer.
Does this progression of her disease mean she will die sooner than if the treatment had put off the inevitable progression? We don’t know the answer to that. But we know that the hope she felt at the start of treatment was quickly replaced with loathing for the drugs and their profound side effects. As she struggled through treatment, she wondered whether a few months of misery would lead to many months of “good days”.
Time and further clinical studies with this treatment will tell how the treatment affects quality of life and mortality, but my mom won’t be among the women to benefit.
Hopes and fears
When her liver showed signs of recovery, my mom’s oncologist presented the next treatment option. We all seized on a new hope. And as I bring this to a close, my mom is hoping that this treatment won’t leave her feeling as miserable as the first. And she’s worrying about her out-of-pocket expenses.
We’ve come full circle.
Franziska Rokoske