The death of little Charlie Gard in England's single-payer health care system should be a lesson to the millions of people advocating for such a system here in the United States.
So many aspects of that case horrified me. It wasn't that the government said that it could no longer justify spending additional money on Charlie's care; that's to be expected in a system of rationed care (which is what single-payer is).
No, it was that Charlie's parents were forbidden from taking him elsewhere for care at their own expense. In a very real sense, Chris Gard and Connie Yates lost de facto custody of their child without a single judicial determination of neglect or abuse.
That is appalling, and should drive home the point that government control of health care is far more about control than it is about care.
But another aspect struck me as well. In denying Charlie's parents the right to bring their son to the United States to try a new form of treatment for Charlie's mitochondrial depletion syndrome, the European Court of Justice said that this would expose him to "continued pain, suffering and distress," and that undergoing experimental treatment "with no prospects of success ... would offer no benefit."
The implications of that statement are even farther reaching.
Many "experimental treatments" do not stay "experimental" for long. The list of drugs, surgeries and other therapies that started out experimental and became mainstream is far too long to recount here. But I have personal experience with one such treatment.
In August 2008, I tore the anterior cruciate ligament in my left knee. The injury left me completely unable to run, and able to walk only with a cane. The simple act of turning left or right would frequently cause my left knee to pop out of joint, throwing me to the ground.
The first surgeon I consulted advised that, given my age (47), I should just do physical therapy and try to strengthen the rest of the muscles around the affected knee. I had toddlers at the time, and was devastated at the prospect of spending the rest of my life unable to run, dance or play sports with my children. So I sought a second opinion from another physician in a nearby city who happened to be the orthopedic surgeon for a major sports team. He scoffed at the earlier recommendation. "Of course we can fix this," he assured me. "You'll be as good as new."
I had ACL reconstruction surgery in December of that year, using part of my patellar tendon to replace the torn ligament. During the consultations, my surgeon told me something quite relevant to the issue of Charlie Gard's right to "experimental" treatment. "30 years ago," he explained, "these types of surgeries were cutting edge. The only people who got them were professional athletes. We were trying to get them back out on the field and save their careers. But enough of us developed expertise that the surgery has become run-of-the-mill, and now we fix 'weekend warriors' like you."
Because pro athletes (and other wealthy people) were willing to pay for those experimental surgeries early on, millions of others — like me — reaped the benefits later.
That exposes one of the huge advantages of a free market health care system, and another ugly reality — rarely discussed — of single-payer health care: It kills incentives for medical innovation.
Among the reasons that the quality of medical care — and the rate of medical innovation — in the United States is so high, is that there are people who are willing to pay for "experimental" treatments. Sometimes their careers depend upon it, like the athletes my orthopedic surgeon described. Sometimes they are simply wealthy and are able to afford it. Sometimes they are desperately ill; we have all heard of cancer patients who bravely underwent new and relatively untried treatments, trying to save their lives.
Mitochondrial depletion syndrome — the illness that killed Charlie Gard — is a very rare disease. It will never draw the attention of government bureaucrats whose primary responsibility is to allocate limited dollars for maximum impact. Especially in a single-payer system, some government bureaucrat decides, "Nobody will get this treatment, because we don't know whether it will work." S
Because there's no time or money invested in it, it never gets the chance to work.
But when millions of individuals and thousands of companies - not just government officials - are willing to explore and invest in new drugs, new surgeries, and new treatments, this offers researchers, pharmaceutical companies, and medical professionals untold opportunities to expand their knowledge and the potential efficacy of those treatments.
That is the way "experimental" treatments become mainstream.
In a single-payer system, my initial doctor visit, a little physical therapy, and my cane would have been free.
But I'd still be crippled.