We’re 10 years into the future and you have terminal cancer. Still, all is not lost.
Doctors in other countries are reporting successful remission of your type of cancer, using a drug originally approved in the United States for some other purpose. There are several journal articles that appear to back up these claims and there is additional positive information on the Internet.
Here’s the problem. The FDA has not approved this drug for cancer treatment; so its use for that purpose is “off-label.” Also, there have not been the clinical trials required by the “comparative effectiveness” board; so it’s not considered a “best practice.”
Ever since the Affordable Care Act (ACA) passed a decade earlier, that has meant that Medicare won’t pay for it. And since Medicare isn’t paying, private insurers won’t pay either. Fortunately, you’ve accumulated some savings through the years. Even though the drug is quite expensive, your doctor knows you can pay for it yourself.
So what does your doctor do about this promising new treatment?
He doesn’t tell you about it.
What?…….Doesn’t tell you about it?…….Isn’t that a violation of medical ethics?…….To say nothing of professional ethics?…….Or plain vanilla, garden-variety ethics?…..And what about malpractice?……If your family finds out about the doctor’s silence after your demise, won’t they be able to sue?
The answer to that last question is “no.” The reason: 10 years earlier, Congress followed the advice of Peter Orszag, who was very involved in creating the ACA. Orszag’s proposal for malpractice reform was to give doctors a safe haven against lawsuits as long as they practice “evidence-based” medicine.
So as long as your doctor sticks with the “best practice” (which in your case is palliative care for your remaining days), he has no legal liability. On the other hand, if he tries something new that is not evidence-based (even though it might save your life), he steps into a legal no-man’s land. The latter, by the way, has become much more risky due to the increased political power of trial lawyers during the Obama presidency.
In a separate piece, Orszag argued that the ACA gives Medicare the authority to refuse to pay for treatments that are not evidence-based. As for new discoveries, he endorsed an idea that originally appeared in Health Affairs and was subsequently touted by David Leonhardt in The New York Times. To wit: give new treatments and technologies three years to prove they are better. If they fail that test, quit paying.
In your case, the effort was never made. The short time period, the uncertain outcome and the expense of clinical trials discouraged the drug manufacturer from even trying.
Bottom line: You not only do not get a treatment that might have saved your life, you don’t even get told that it’s an option. (Not telling patients about treatment options that are not available to them is very common in other countries, by the way.)
I know what you are thinking. Why can’t you agree not to sue your doctor, regardless of what happens, freeing him to use his own best judgment without fear of liability? In general, people weren’t allowed to contract away their medical tort liability under the old system and this wasn’t changed in the reform. Why? Unlike the NCPA malpractice reforms proposed by yours truly, the purpose of the Orszag reform was not to liberate patients and doctors. It was to control costs.
This is one reason why you probably will not be able to find a doctor to try out the new drug therapy — even if you learn about the drug and even if you can pay for it yourself. A second reason is that under the ACA demand greatly exceeds supply for virtually every physician service. Doctors can keep their plate full by practicing in government-approved ways and not taking any legal risks. A third reason you may not get the treatment that may save your life is another rule that was not changed by health reform. Doctors must treat every patient of Medicare-eligible age (even if not actually enrolled), according to Medicare rules. If they want to practice medicine in a different way, they must leave the Medicare program altogether. In this way, the government makes it very expensive for a doctor to save a single patient.
By the way, I consider Peter Orszag a friend and we worked together successfully on the recent reforms to the 401(k) law. His heart’s in the right place, even when he’s mistaken.
John C. Goodman is president and CEO and Kellye Wright Fellow at the National Center for Policy Analysis. He is widely known as the "Father of Health Savings Accounts."
