Expert Group Hopes to Mobilize Patients to Call for Cancer Drug Pricing Reforms

A group of 118 well-known cancer experts have come together to spotlight the escalating costs of cancer treatment with an aim to galvanize patients and grassroots advocates to make their voices heard.

“A cancer patient—based grassroots movement that advocates against the high price of cancer drugs can accomplish a great deal,” wrote the experts in a commentary published in the journal Mayo Clinic Proceedings where their recommended drug pricing reforms were outlined.

The experts suggest that advocates look to model their efforts on the movement by HIV/AIDS activists in the late 1980s and 1990s, which helped to spur faster drug development and broaden access to promising experimental drugs.

“High cancer drug prices are affecting the care of patients with cancer and our healthcare system,” lead author Ayalew Tefferi, MD, a hematologist at Mayo Clinic, noted in a statement. “The average gross household income in the US is about $52,000 per year. For an insured patient with cancer who needs a drug that costs $120,000 per year, the out-of-pocket expenses could be as much as $25,000 to $30,000—more than half their average household income.”

Average annual cancer drug prices reached more than $100,000 in 2012 after soaring $8500 a year on average, according to a 2015 study that was cited in the journal article. Changing trends in insurance coverage now leave patients with out-of-pocket costs of as much as 20% to 30% of their cancer treatment costs, the report said.

This leaves many patients, particularly senior citizens who are on fixed incomes, in the position of having to make hard decisions about what to spend their limited funds on and what to do without. The group said families are sometimes going without treatment so that they can afford necessities such as food, housing, and education; and in some cases individuals are liquidating assets to pay for what they consider necessary, they said.

Medicine is often the item that is sacrificed, they said. “It is documented that the greater the out-of-pocket cost for oral cancer therapies, the lower the compliance. This is a structural disincentive for compliance with some of the most effective and transformative drugs in the history of cancer treatment.”

The group described its list of recommendations—many of which have been suggested by others—as being practical and capable of implementation. “Although some economic experts lament the difficulty of finding solutions, simple and measured incremental actions can improve the situation and allow market forces to work better,” they wrote.

Among the recommended drug pricing reforms the group of 118 experts put forth is that fair price proposals be incorporated into FDA drug approval reviews, that Medicare be empowered to negotiate drug prices, allowing importation of cheaper drugs from abroad, and using legislative mechanisms to stop drug manufacturers from stalling the introduction of less costly generics into the US market.

The group is also encouraging organizations that represent cancer specialists and patients (eg, American Society of Clinical Oncology, American Society of Hematology, American Association for Cancer Research, American Cancer Society, National Comprehensive Cancer Network) to consider the overall value of drugs and treatments in formulating treatment guidelines.

In other comments, they argued that the per-capita benefit from healthcare spending in the United States is inferior to what those in various other industrialized nations receive—even though US spending on healthcare is very high.

“In the United States, healthcare is delivered in a profit-driven marketplace that commands 18% of our gross domestic product, compared with 4% to 9% in other industrialized nations. Despite the 2- 3-fold higher spending per capita, the United States is not “number 1” in health care parameters compared with other industrialized nations that spend far less per capita. Rather, the United States often ranks well below average in several comparative studies that assess a number of measures of healthcare quality,” the group report said.

Teffen A, Kantarjian H, Rajkumar SV, et al. In support of a patient-driven initiative and petition to lower the high price of cancer drugs [published online July 23, 2015]. Mayo Clin Proc.