The Disappointing Reality of Crowdfunding Cancer Care

“We should be talking to patients about the cost of their care, but providers aren’t comfortable having these conversations because we haven’t been trained how to have them,” said Fumiko Chino, MD, radiation oncologist and cancer researcher at Memorial Sloan Kettering Cancer Center in New York City who focuses on financial toxicity.  She said the GoFundMe study was useful to depict the real-life money struggles of vulnerable patients who might be living at the poverty line. “I hate that we live in a world where people are reduced to begging on the internet to pay for their cancer care. It’s humiliating and unsustainable, and frankly, it’s unfair to patients,” she said.

Yet doctors have more power than they think, said Dr Chino. She was part of a research team that surveyed 300 insured adults with solid tumors at the time they were enrolled in treatment and then again 3 months later about their financial burden, decision making, and cost discussions with doctors. Of the 19% who talked to their doctors about costs, 57% reported experiencing lower out-of-pocket costs as a result of those discussions.

It’s worth noting that doctors weren’t solely to blame. More than half of patients in the 2015 study that was published in the American Journal of Managed Care had wanted to talk to their doctors about out-of-pocket costs, implying they too dropped the ball in broaching the topic.⁵ “These discussions are uncomfortable for patients because they worry that if they talk about cost, they’ll get lesser care,” Dr Chino said.

Dr Chino encourages health care providers to bring up the topic with each patient before they start treatment. Here’s her simple script: “Cancer care can be expensive and not every person knows what their insurance will pay for. If you’re having trouble affording care, I’m here to talk to you. We might have some options.” In addition to referring patients to a financial care counselor to give them an estimate of their out-of-pocket expenses, she considers whether she can prescribe different medications. “Maybe there’s another antinausea medication that I could give you that would be cheaper and work as well,” she said.

Or, oncologists can advise patients to get their scans at an imaging center that’s in their insurance network and not where they’re currently being treated. Finally, doctors need to be aware whether some supplemental services, such as visits to dieticians, will be billed separately. “It’s a delicate balancing act [between] giving everyone every support service and knowing what their insurance will pay,” said Dr Chino.

Doctors can play an important role in shaping the drug-pricing debate, added Bishal Gyawali, MD, a clinical fellow in medical oncology and assistant professor in public health sciences at Queens University in Kingston, Ontario. They can protest publicly against the high cost of drugs. As an example, he referred to the case in 2012 in which drug maker Sanofi agreed to cut in half the price of the colon cancer drug Zaltrap (ziv-aflibercept), after Memorial Sloan Kettering Cancer Center refused to pay for the original price of approximately $11,000 a month because the drug only extended survival by a few months.⁵

Doctors also can vote with their prescription pads by refusing to order drugs that are considered “low value,” meaning the medications contribute to financial toxicity but don’t significantly improve outcomes. (Dr Gyawali published in 2017 a list of what he considers to be low-value practices in oncology.)⁶

Finally, doctors who serve as members of committees of prominent professional organizations that make guidelines for cancer treatment can say, “We’re not going to recommend these drugs because they’re excessively expensive, and the benefit is low,’” said Dr Gyawali. “Doctors may be limited in their power, but that doesn’t mean they’re totally helpless. We can be important advocates for our patients inside and outside of the clinic.”

References

1. Gilligan AM, Alberts DS, Roe DJ, et al. Death or debt? National estimates of financial toxicity in persons with newly-diagnosed Cancer Am J Med, 2018;131(10):1187-1199.e5.
2. Cohen AJ, Brody H, Patino G, et al. Use of an online crowdfunding platform for unmet financial obligations in cancer care [published online September 8, 2019]. JAMA Intern Med. doi: 10.1001/jamainternmed.2019.3330
3. Hunter WG, Zhang CZ, Hesson A, et al. What strategies do physicians and patients discuss to reduce out-of-pocket costs? Analysis of cost-saving strategies in 1,755 outpatient clinic visits. Med Decis Making, 2016;36(7):900-910.
4. Ubel PA, Zhang CJ, Hesson A, et al. Study of physician and patient communication identifies missed opportunities to help reduce patients’ out-of-pocket spending. Health Aff (Millwood).2016;35(4):654-661.
5. Pollack, A. Sanofi halves price of cancer drug Zaltrap after Sloan-Kettering rejection. The New York Times. Published November 8, 2012. Accessed October 8, 2019.
6. Gyawali B. Low-value practices in oncology contributing to financial toxicity. Ecancermedicalscience. 2017;11:727.

This article originally appeared on Cancer Therapy Advisor