As cancer care advances, costs and concerns keep rising, too

Although doctors and hospitals report potentially sunnier news by the day about novel cancer treatments, it’s also worth keeping in mind that difficult obstacles like data misinterpretation still must be worked out to avoid endangering patients. The therapies themselves as well as cancer care overall can be crushing in their costs. And some experts also are raising questions about Big Pharma and the independence of advocacy groups that patients and families often turn to when diagnosed with different cancers.

Let’s start with the ray of optimism that the Washington Post reported for patients with advanced lung cancer. It kills more than 160,000 Americans annually, and isn’t diagnosed often until it reaches late stages. Lung cancer, the Post says, retains its stigma because of its proven link to smoking. Both smokers—and nonsmokers who also may develop the disease for many other complex reasons—are blamed for causing their own illness.

Oncologists have begun to look at this cancer not as one but many different disease, and the paper says immunotherapy may improve outcomes for a slice of late-stage patients, halting the disease’s spread and without the significant side-effects of current chemo or radiation treatments. In immunotherapy, patients’ cancers are tested to determine which drugs may best target and destroy tumors by unleashing the bodies’ own disease-fighting (immunity) systems.

Here’s where the care issues get more complex. The Post says that lung cancer experts and patients are starting to see some favorable results with Keytruda, a drug that gained national attention when former President Jimmy Carter said the medication had helped him fight his cancer. But it is not until low in the Post story that mention gets made that researchers have yet to determine how long immunotherapies can send lung cancers into remission, and how many patients benefit from it. Then there’s Keytruda’s annual treatment price: $150,000.

Read the Post story, and others like it, with care, and it becomes clear that the patients quoted and cases described are coming from clinical trials, where patients’ costs, especially for drugs under investigation, are covered by pharmaceutical companies.

Meantime, another reality of cancer care is sadly described by Stat, the online health news site, which details the staggering costs of the disease’s treatment. It says patients and families are describing the financial toll of their cancer treatment as “toxic.” Consider these numbers quoted from the National Cancer Institute:

• Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
• Up to 34 percent borrow money from friends or family to pay for care.
• For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
• Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.

Stat also deserves credit for another recent story focused on peer-reviewed and published Mayo Clinic research that warns of challenges that still need to be resolved in the growing use of targeted or “precision” therapies, not just for cancer but also for other diseases. These innovative approaches rely on expert testing and interpretation based on proprietary comparative databases. Mayo researchers say both are subject to error but not, currently, regulatory oversight.

They focused on a case in which a family was forced into over-testing and even the possibility of unnecessary surgeries to implant heart defibrillators after genetic data was misinterpreted in the death of a 13-year-old boy. They said that current genetic databases, for example, aren’t scrubbed to ensure that information in them gets entered correctly or that they are purged of wrong data.

How does this occur? The Economist recently reported that as many as a fifth of published papers in genomics may include errors due to researchers’ reliance in building databases with the common software Excel. Although these errors may not undercut research directly, they stem from some silly and maddening software flaws: Many genes carry names like Septin 2, which Excel auto-corrects (into the date Sept. 2 or September 2), much as the Microsoft Office product Word “fixes” what it thinks are spelling errors. Excel also takes identifying codes and misinterprets them as calculation commands.

Stat notes that the precision medicine experts, when interpreting data, are looking at difficult strings of genetic information, codings with groups of letters tied to genes that might look like alphabet soup. Pathologists now are deeply involved in interpreting test data to make critical care decisions in targeted or precision medicine. I’ve experienced in my work their all too human and fallible efforts in scrutinizing relatively easier medical materials.

Meantime, if patients find cancer care to be daunting and exhausting, they also may wish to look with some skepticism at their many advocacy groups: Two researchers, from Case Western Reserve University and the Oregon Health and Science University, wrote a letter in the respected Mayo Clinic Proceedings that they examined public information on 68 cancer patient advocacy organizations. Fifty-one of them disclosed that they received a median of seven sponsorships from biopharmaceutical companies. They said they reached no conclusions on whether these Big Pharma entanglements were “appropriate” but they did see “this alliance is sizable.”

I’ve written about the soaring costs and complexities of cancer care, and I know that patients and their loved ones struggle with many big, difficult issues. It’s great to know that medical science is advancing in the war against cancer. It’s always good to see robust coverage that explains medical science research. But its progress should neither be over- nor under-stated, and its costs and effects on real people who aren’t rich should not be ignored. I also would support the Ohio and Oregon researchers’ suggestion that more study is needed about Big Pharma spending with cancer patient advocacy groups.