Problematic PR releases: Costs are hidden in cancer testing news

Kathlyn Stone is an associate editor with She tweets at @KatKStone.

Precision medicine and the tests that enable it are becoming increasingly common in cancer care. So it’s no surprise that we see more and more PR announcements relating to cancer testing from a variety of institutions including government, academia, and industry.

There’s little debate that some of these tests would benefit patients. But we also commonly see messages about tests that are imbalanced and incomplete and which lack crucial details that any journalist or patient would want to know about.

Some of those deficiencies were on display in three news releases I spotted on the same day — all dealing with cancer testing and all of which did not address an increasingly pressing issue in cancer care: cost.

Questions that should be raised

The first news release was from the National Cancer Institute, headlined: “NCI-led research team develops predictor for immunotherapy response in melanoma.” It discusses a possible “gene expression predictor” that could pinpoint which patients might best benefit from immunotherapy. 

Immunotherapy has enjoyed a meteoric rise in the cancer treatment landscape ever since checkpoint inhibitor drugs were found to slow progression or even eradicate signs of the disease in some melanoma patients just a few short years ago. The FDA has in recent months approved immunotherapy for some of the hardest-to-treat advanced cancers, including lung, colorectal, bladder, cervical, kidney, and others. 

Every advanced cancer patient becomes aware of this as they go through diagnosis, staging and treatment planning, and hopes to be among the fortunate few who respond positively to one of these drugs.

As one of the researchers who led the study put it in the release:

“There is a critical need to be able to predict how cancer patients will respond to this type of immunotherapy,” said Eytan Ruppin, M.D., Ph.D., of NCI’s newly established Cancer Data Science Laboratory, who led the study. “Being able to predict who is highly likely to respond and who isn’t will enable us to more accurately and precisely guide patients’ treatment.”

True. There’s also a critical need for a cost discussion. What might the test cost? How would it fit into the already unsustainable cost of modern cancer treatments? How would this test compare with other genetic tests, some of which carry a price tag of thousands of dollars? Some of these tests are covered by insurance plans and Medicare, but not others. Who decides? Are those who decide the appropriate ones to be making the call?

Ignoring costs is a problem across the board

The National Cancer Institute isn’t the only US agency that sidesteps cost implications. The FDA consistently omits discussion of cost when sending out its announcements on new approvals — a fact we always comment on in our reviews of the agency’s releases with a message similar to this one: 

We look forward to the day when any news release about a new drug — even one from the FDA — includes some mention of cost in its message. After all, the value of a new drug is a function not just of how well it works, but its cost-effectiveness.

Cost information also didn’t get any acknowledgment in these two other cancer-related news releases that came out the same day as the NCI release:

Many patients go deep in debt to pay for treatment

Cost is the elephant in the room when it comes to caring for America’s cancer patients. Many patients go deep in debt, are forced to skip treatments, or declare bankruptcy following their diagnosis. Those most immersed in cancer treatment — patients and doctors — have the least power over the situation but the most at stake.

UCLA-Santa Monica oncologist Andrae Vandross, MD, says some of his patients ask about cost but others don’t. He agrees it’s an issue that needs to be broached more often.

“I do think cost is very important to place in appropriate context. However, I’m also sensitive to the notion that some patients may feel that I may offer or not offer something based on ability to pay. I hope this is rare.” He said it’s sobering to realize that the more Medicare and Medicaid pay for treatments despite their expense or effectiveness, the fewer people will have access to the services and treatments they need. That’s because the budget pot is finite, but drug and testing companies have little to no barriers to setting prices.

Bankruptcies three times more common

Vandross said he has experimented with bringing up cost with patients “and it can sometimes be awkward.” Most other physicians apparently feel the same way, according to the results of a study presented at a recent American Society of Clinical Oncology meeting.

Based on 525 recorded interactions with cancer patients, the study found that cost was only discussed 28% of the time. When it was brought up, it was most often broached by the patient (70% of the time versus 30% for physicians).

Writing about the study for Medscape, Thomas Bosworth said:

One statistic was cited several times: Bankruptcies are three times more common in individuals with cancer than in those without, after matching for confounding variables. There is no reason to expect this to change. The newest and most effective oncologic drugs are increasing in cost at a time when affordable health insurance is becoming more uncertain. Cost specialists focus on the financial toxicity of cancer care, but clinicians remain largely out of the loop.

“You do not go to medical school to understand the cost of care and how it impacts your patients, but it is clearly becoming important to learn,” said Rahma Warsame, MD, a research hematologist-oncologist at the Mayo Clinic, Rochester, Minnesota. She was among those who presented discouraging data on the infrequency with which clinicians discuss cost but acknowledged that the subject can be overwhelming. Clinicians do not typically have the tools to provide meaningful guidance.

Addressing cost in PR news releases may not be the answer to these cost dilemmas, but it’s an important step toward making cost a part of our health care discussion.

And that’s the only way this issue will get the attention and emphasis it deserves from policymakers and the public.

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