Isn’t getting cancer bad enough?

That’s the frustrated thought that goes through my mind when I see patients with cancer suffering — not from their cancer, but from the failure of the health care system.

Take Nancy,* a 60-year-old woman with hormone-positive breast cancer. When she came to the emergency room with a fungating breast mass, we knew immediately she had ignored it for a long time; she said she hadn’t been able to see a doctor because she didn’t have insurance. But after confirming the diagnosis of incurable metastatic breast cancer, she was discharged home to continue with hormone therapy. One year later, she returned to the hospital with worsened disease. She still didn’t have insurance! She hadn’t had any treatment in that entire year! I couldn’t have been more shocked. How did she fall through the cracks yet again?

It’s simply inexcusable that our system can’t help even those patients with life-threatening illnesses. Not surprisingly, studies have shown that patients who have Medicaid or no insurance are more likely to present with incurable disease and die from their cancer.

Having private insurance doesn’t guarantee cancer costs will be paid for, either. How many times do insurance companies refuse to pay for what the oncologist recommends? How many times do I have to tell a patient, “I’m ordering this scan because I’m worried the cancer may have spread. Please know there’s a good chance your insurance company won’t pay for it. If they say no, we’ll try to fight.”

I am acutely aware of how often we lose the battle with insurance companies. Even after spending hours doing pre-authorizations and peer-to-peer reviews, an insurance company can refuse to pay for something, without giving any good reason at all. Why do we have to resort to telling patients, “Your last resort is to contact your Congressional representative. Maybe they can petition your insurance to cover the scan.”

Another problem is that many patients with insurance can’t afford their copays. A common complaint from patients is, “I’m going to die anyway. I can’t afford the copay for the cancer treatment, so I’m just not going to get it.” The American Cancer Society offers resources specifically for tackling this problem, which requires a patient to navigate the health care system in a savvy fashion that’s too difficult for many sick individuals.

The National Comprehensive Cancer Network (NCCN) strongly encourages all patients with cancer to participate in a clinical trial as part of their cancer treatment. However, a recent study showed that over 60% of patients with insurance who attempted to participate in a clinical trial experienced at least one insurance claim denial. This is shocking, especially since these denials all occurred after the Affordable Care Act’s mandate that private insurers should cover routine costs for cancer clinical trial participation.

Another significant barrier that patients face is access to palliative care. A patient with cancer who is in pain needs — and deserves —
relief. That often translates into requiring opioids, since other analgesics are rarely effective. I commonly need to prescribe high doses of opioids for my patients, for example, 120 pills at a time. But the regulations for prescribing opioids are becoming more and more cumbersome. Logging into the prescription monitoring system, documenting extensively, and communicating with the pharmacist —
these are some of the things oncologists need to do, simply to write a prescription for opioids. And these steps take a tremendous amount of time. This is time that could be used so much more effectively by taking care of our patients. Last year, ASCO published a policy statement on opioid therapy, stating, “Large-scale proposals currently being considered in the U.S. could likely exacerbate this problem and have adverse consequences on patients in need of medically indicated treatments.”

These are some of the ways the U.S. health care systems fails both patients with cancer and their doctors. We need to raise our voices to say clearly: This cannot go on. Oncologists and patients need to sit at the table with policymakers to create real change. There’s too much at stake.

*  Name and details changed to protect patient privacy.

Miriam A. Knoll is a radiation oncologist.  She can be reached on Twitter @MKnoll_MD. This article originally appeared in ASCO Connection.

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