By Chris Adams

As cancer medicines get more and more precise – and expensive – researchers worry about cost and health disparities.

“We are treading on very thin ice in the research world if we don’t call this out,” said Dr. George Demetri, director of the Sarcoma Center at the Dana-Farber Cancer Institute, a Harvard Medical School teaching hospital. Demetri, who also sits on two drug company boards, said pharmaceutical companies are developing life-saving drugs at a record rate, but there has been market failure when it comes to pricing, particularly of generic drugs.

In a session with National Press Foundation fellows, Demetri (bio, Twitter) gave a tutorial on precision medicine, which uses information about a person’s own genes or proteins to prevent, diagnose or treat disease. For example, rather than using a one-size-fits-all approach to treating breast cancer, precision medicine would determine if the cancer was “HER2-positive” and, if so, use specialized medicine to treat it.

The breakthroughs in, for example, CAR T-cell therapy are dramatic, but so are the costs, which can be $500,000 or more. How will publicly funded health programs, such as Medicare and Medicaid, cover those costs – and will private insurers do so? Medicare in 2019 said it would cover CAR T-cell therapy. Private insurers have taken a drug-by-drug, case-by-case stance, rather than make blanket policies that new classes of therapy will be covered.

“We are at an incredible time for cancer research and medical research, and public policy and public understanding is a little behind the eight ball,” Demetri said. “We’ve still got the public on our side, and I don’t want to lose them because of the issues of pricing.”

“I wish market forces would control the rising cost of generic drugs,” he added. The problem, he said, is that there are a wide variety generic drugs that each pose different pricing issues.

For example, for pediatric cancer drugs, the market is tiny and profit margins are narrow, causing a shortage of investment in new drugs. In other cases, exorbitant generic drug prices are caused by “the unintended consequences of very well-intentioned legislation to try to push research into older generic drugs to show that they do or do not work,” he said.  Investors who fund such research have the right to control use of the drug for that specific purpose “and potentially charge what they want for the drug. So that has led to market inequities and some of the almost unthinkable predatory pricing of generic drugs.”

Journalists can help by explaining to the public the complex system of drug development, incentives, legislation and pricing and brokering a respectful discussion that does not assume that any one actor has the answer, Demetri said.

“It’s much too complicated for that.”