When does typical baby behavior become medically treatable baby behavior? When misguided doctors and scared parents promote it from what is normal to something that sounds ominous and urgent.
An essay published in the New York Times by Dr. Aaron E. Carroll says that calling an ordinary health problem a disease leads to bigger problems, and a primary example of it is brought to you by way too many people who care for babies.
Babies spit up. A lot. About half of all healthy infants, Carroll says, spit up more than twice a day. More than 9 in 10 completely stop this behavior without treatment. “When a majority of infants have (and have always had) a set of symptoms that go away on their own, it isn’t a disease — it’s a variation of normal,” Carroll writes.
Infants vomit more often than older people because their diet is all liquid, because they eat frequently and because their developing esophagus isn’t quite closed off from their small stomachs. Milk leaks back into the esophagus, producing symptoms of gastroesophageal reflux, one of which is regurgitation.
Gastroesophageal reflux disease (GERD) is different from this common baby behavior. Children with GERD are truly ill, but they are rare. “But over time,” Carroll says, “more and more babies with reflux were labeled as having a ‘disease.’ The incidence of a diagnosis of GERD in infants tripled from 2000 to 2005.”
We have a term for that, and readers of our patient safety blog will recognize it: disease-mongering. As defined by the journal PLoS Medicine it’s “the selling of sickness that widens the boundaries of illness and grows the markets for those who sell and deliver treatments.”
Carroll is familiar with the phenomenon. “When I was a pediatrics resident,” he writes, “my hospital constructed foam wedges for infants to sleep on. The thinking was that infants who were sleeping at an angle would be less likely to have milk come back up.
“The wedges cost about $150. They didn’t work.”
Carroll’s pediatric colleagues have tried other ways to control infant regurgitation — special infant seats; thickened food; special formulas. “None of these things really work,” he concludes. “An incredible amount of time and money has been wasted.
“The bigger problem, though, is that the vast majority of these infants weren’t ‘sick.’ We just gave them an official diagnosis. This labeling of patients with a ‘disease’ can have significant consequences, for both people’s health and the nation’s health-care budget.”
Drugs, of course, play a large role in disease-mongering. Infants may be treated with a group of drugs called proton pump inhibitors (PPIs). You might recognize some of their brand names — Nexium, Prilosec, Prevacid and Protonix. Between 1999 and 2004, the use of one liquid PPI increased more than 16-fold, Carroll reports, never mind that PPIs have not been approved by the FDA for the treatment of GERD in infants.
In 2009, a randomized, controlled trial whose results were published in The Journal of Pediatrics examined how well a PPI worked for infants with symptoms of GERD. It found that the drug had no more of an effect than a placebo, or fake, inert pill. But — and here’s the harm of disease-mongering — the children who took the PPI had significantly more serious adverse events, including respiratory tract infections.
Another study Carroll recalls was published last year in the journal Pediatrics. The researchers randomly chose parents who were told either that their baby’s reflux was GERD or was, instead, “a problem.” Half of each of group also was told that medications were ineffective.
Parents who were told that their kid had GERD were far more interested in having their child take medication, even when they were told that it was ineffective. Parents of babies who were not labeled with GERD weren’t interested in medication when they were told it didn’t work.
“Words matter,” Carroll says. “Studies have shown that once people with high blood pressure are labeled ‘hypertensive,’ they are significantly more likely to be absent from work, regardless of whether treatment was begun. Many diseases have become so much broader in definition that they now encompass huge swaths of the public.”
But medicalizing normal variations in physiology so that they become “treatable conditions” leads to unintended — and unwelcome — consequences. Needless worry. Treatments with unpleasant and possibly dangerous side effects. Unnecessary costs.
As one of Carroll’s colleagues puts it, “Our job as doctors is to make sick patients healthy, not to make healthy patients sick.”