My local newspaper is struggling with the growth of web-based news — as are so many papers nationwide — and shrinking as a result, but it still has its own health beat reporter.
I’ve never met this reporter and the tone of her articles implies she is a nice and well-meaning person, but her pieces often drive me nuts. They make the assumptions so common in healthcare journalism, and those assumptions are never questioned. Let’s explore one of them today – more information must result in better health.
The article in question covered a new genetic test for scoliosis, or an abnormal sideways curvature of the spine. The test manufacturer claims that the test can tell which patients with idiopathic (meaning no clear cause) scoliosis will have worsening curvature to the point they need surgery. The article begins with it “spared [a young woman] a lot of agony . . .” and “gave her parents . . . relief . . . .” It is a “simple swab to the cheek [that] predict[s] the future . . .” of her scoliosis. The reporter claims the test is 99 percent accurate, and that screening is “. . . done during the growth-spurt years to detect the curvature early.”
In the middle of the article the cost of the test is mentioned, $3,000, as is a statement that the physicians at the local children’s hospital aren’t convinced the test is a good option. Other than that, the tone is glowing. There is no space given to any other voice explaining why the test might not be a good idea. The article finishes with “The family is also relieved that [the girl’s] exposure to radiation will be reduced because she won’t need x-rays as often. ‘When her doctor told us he won’t see her until she’s 18, I was just amazed.’” Best I can tell her local information source was the head of a scoliosis center.
I’ve concluded that health beat reporters fall into several traps that negate their journalistic training. They turn off their skeptical brains when they talk to people in white coats. I rarely see stories where a white-coated person selling a product or service is challenged by either the reporter directly or by another reasoned opinion. The reporters just assume the medical or scientific experts know what they’re talking about and never suspect other motivations or narrow points of view.
Reporters are taught to connect facts to an individual human story, and the more emotion the better. If an expert lays out a story that just feels right, he’s rarely questioned. Other members of the Government Industrial Medical Coalition make sure the emotions are aligned with the product’s mission. A press release by the test manufacturer quoted an orthopedic surgeon as saying, “[s]coliosis can be a devastating diagnosis for children and their families. They all fear the worst. Now we can reduce that fear for most patients . . . .”
The well-meaning advocacy group piled on. The President of the National Scoliosis Foundation said, “[p]arents are often frightened, and frustrated, because they don’t know what to do to help their child with scoliosis. The . . .[t]est provides information that helps reduce the family’s anxiety . . . .”
What happened in this story is a company, a disease advocacy group, a local hospital system with a scoliosis center, and a local ologist collaborated to feed this reporter an easy-to-write story. The emotional individual human story was provided: a 15-year old girl who along with her parents were worried her scoliosis might worsen. The implication to the reader was given that we can control this disease. The reader was left with something to do: order a test. The story gave victims hope.
Now what if the reporter wasn’t blinded by white coats? Maybe the interview would have included these elements:
Q: How many teenagers with scoliosis worsen to the point they need surgery?
A: 1% to 4%. The vast majority have mild cases that never require surgery.
Q: Is there any clinical trial evidence that scoliosis patients have improved health with this test?
A: No. The recently published study was only a case-control retrospective analysis. (I also searched the FDA website in multiple ways to look for supporting evidence and couldn’t find this test.)
Q: Are there any studies in the medical literature estimating the cost-effectiveness of this test?
Q: How much does the alternative monitoring approach of periodic spine x-rays cost?
A: A few hundred dollars
Q: Is the radiation exposure from a spine x-ray dangerous?
A: The radiation exposure from the x-ray is about one tenth of the radiation you’re naturally exposed to each year.
And how about a few tougher questions? (I don’t know the answers to these)
To the local ologist: Do you own stock in the test manufacturer? Are you paid by the test manufacturer to speak to other doctors? Will you still order x-rays in patients because the test isn’t 100% accurate? Why aren’t parents fears relieved when you tell them that the vast majority of scoliosis patients won’t require surgery, won’t have back pain as a result of the scoliosis, and will lead perfectly normal lives?
To the scoliosis center administrator: How much of the $3,000 test cost goes to the center? Do you receive any volume discounts or other considerations if you order more tests?
To the parent or patient: How do you feel being coerced into an expensive test that has no proof it will improve your child’s health and does not guarantee your child’s scoliosis will not progress to the point of requiring surgery?
By not asking the tough questions, the health beat reporter let herself get sucked into the mindset of the narrow-minded advocates and actually increased the fear and anxiety level of families dealing with this condition. Now families with no health insurance, or even ones with a high-deductible plan, are left to feel guilty not paying for this test out of their pocket because they can’t afford it.
The reporter was convinced by the advocates that more information necessarily results in better health. The case for scoliosis genetic screening is weak at best. The net effect is this reporter, and the hundreds of others who write similar stories, raised anxiety levels and made American healthcare a little more expensive with no proof any health outcomes will improve. This style of reporting is irresponsible and just plain lazy.