Hello Planet Earth:
Seventy-two years ago, a pathologist working at Columbia-Presbyterian Medical Center in New York announced via a medical journal that she had made a discovery after performing a lot of autopsies on dead babies.
I find myself thinking, a lot, about why that physician, Dorothy Hansine Andersen, was hacking up the corpses of dead infants in the first place. A graduate of the medical school at Johns Hopkins University, Dr. Andersen had hoped to become a surgeon. But she was a woman, it was the 1920s, and surgery in those days was deemed to be men's work.
So, Dr. Andersen regrouped and, by 1935, had added a doctorate from Columbia University to her M.D. And from there she went on to one of the most successful careers in pathology ever.
It cannot have been fun to hack up the bodies of dead infants, but that's what Dr. Andersen spent a lot of her time doing. Many of the children supposedly died of celiac disease. But the pathologist noticed that quite a few of them had cysts on their pancreases and in their lungs -- and she concluded that there was a single, underlying explanation. It wasn't celiac but, rather, a never-before-identified disease that she called "cystic fibrosis." In 1938, her findings appeared in the American Journal of Diseases of Children.
In the decades since, it has emerged that "cystic fibrosis" is not a very accurate name for the disease. The fibroid cysts Dr. Andersen noticed were actually just the symptom of an underlying defect present in every single cell in the bodies of those babies. But, here's the thing: Before Dr. Andersen, there were eons of unexplained infant deaths, and folklore suggesting that newborns whose skin tasted salty were doomed. Defective chloride transport across the cell membrane produces that salty taste.
Dr. Andersen's discovery replaced folklore with science -- and, today, there are 30,000 people in the U.S. who are living with cystic fibrosis. That number is growing thanks to all of the scientific breakthroughs that are the direct result of Dr. Andersen's work.
Keeping those 30,000 people alive is expensive. If you are reading this blog, you already know that my daughter has cystic fibrosis. She's a thriving and successful college freshman, and a future olympian (in dressage) but keeping her healthy cost more than $300,000 last year. We, her family, paid very little of that 300 grand; about half of that sum came from my workplace health insurance and the other half from my workplace prescription benefit plan. In other words, the people around me -- in my case, fellow employees of the State of New Hampshire -- are covering most of the expense.
From a public policy standpoint, this is good news wrapped in bad news. We'd save a LOT of money if Dr. Andersen had never 'discovered' cystic fibrosis because there would not be a growing cohort of reasonably healthy CF patients who nevertheless require expensive medications, specialty outpatient care, and frequent inpatient care. Would we be better off, as a society, if we knew nothing about CF?
Obviously not. But with the scientific insight comes ethical responsibility. If we made CF people uninsurable, via exclusions for pre-existing conditions, or if we subjected CF patients to lifetime benefit caps (like the $2 million one to which my daughter was subject until the Affordable Care Act made it illegal) it would arguably have the same effect as pretending Dr. Andersen had never discovered and identified CF. At $300,000 a year, a patient would slam into that $2 million lifetime cap mighty fast!
At the same time, we CF families -- or at least, those of us with good health insurance -- have a responsibility not to succumb to moral hazard. That $300k is three times my annual salary, and such an unconscionably high cost -- arguably driven by monopoly prices being extracted by pharmaceutical companies and other rent-seeking economic actors in the healthcare business -- is not something we can responsibly ignore because we get to share that cost with those around us.
That's the sort of reality that underlies the debate about pre-existing conditions and the future of the Affordable Care Act. CF is an orphan disease (meaning relatively few people have it) with a wealthy nonprofit (the Cystic Fibrosis Foundation) dedicated to controlling it. But what about other chronic conditions -- sickle cell disease (the most common inherited disorder in the U.S.), Alzheimer's, and diabetes? If we make all of these people uninsurable, what then?
Guaranteeing coverage for people with preexisting conditions, as a freestanding public policy principle, makes no sense. Unless there is some kind of requirement, or incentive, for people without preexisting conditions to support the insurance plans providing such coverage, such an insurance plan would quickly run out of money -- or drastically increase their premiums -- as healthy people make the economically rational choice to walk away.
If Dr. Andersen were around today, she's insist that no matter who is president after inauguration day in January 2021, we really have to do something about this. She died in 1963 at too young an age (the same age I am now, in fact) of lung cancer. How sad and ironic that this world-class hero of pulmonology was a chain smoker and thus enslaved by the tobacco companies. Thus, the best way to honor her legacy is to reign in greed, profligacy and expediency in all matters related to human health.
