Dear President Carter:
I was sorry to learn that you are fighting an advanced form of cancer that has spread to your liver and other parts of the body. There is good news, sort of.
As a recent article in the Boston Herald noted:
Former President Jimmy Carter revealed yesterday that he will undergo treatment for cancer that has spread to various parts of his body — and doctors say that despite his advanced age, the 90-year-old may fare well thanks to recent advances in personalized medicine.
“With cancer cells, there are many different mechanisms that make them grow, and a lot of the science has been dissecting genes and proteins that cause it,” said Dr. Andrew M. Evens, director of Tufts Cancer Center. “There’s work around identifying treatment for the patient’s individual cancer and doing it at a genetic level.”
Not so fast Mr. President.
Even as a former President, you will be faced with what is called “step therapy” or “quality pathways” that determine what treatments you get. You have to fail first on the first step of therapy before getting to up to five other ‘approved’ treatments before getting to the ‘advances in personalized medicine.’
You were a plain spoken president, so I probably don’t have to tell you that for people with advanced form of cancer, ‘fail first’ is code for getting sicker and closer to death.
Health insurers claim these pathways don’t affect outcomes. But they refuse to cover the advances that have a very good chance of keeping you alive and well.
Neither the tests for the genetic makeup of your cancer cells to identify where it started, and guide treatment are not at the end of any of these pathways. Under the Affordable Care Act, anything not on a pathway has to be paid for in full by you.
You might think that your doctor will fight to get you the treatments that could save your life.
Sorry to disappoint you.
The leading cancer doctor group -- The American Society For Clinical Oncology (ASCO) – has developed a calculator of value that treats all patients as the same; ignoring the genetic variation in patient response that allows doctors to personalize care.
Indeed, ASCO wants insurers to use their calculator to “evaluate the relative value of new treatments” as they develop “benefit structures, adjustment of insurance premiums, and implementation of clinical pathways and administrative controls.”
That’s not good news either. I’ll give you a couple of examples. I read that you have a family history of pancreatic cancer. So I used the ASCO calculator to come up with a value score (the highest score is 130). The most common treatment for advanced pancreatic cancer that has spread everywhere adds, on average, about 2.5 months of life. That’s worth a whole 32 points. But then 20 points are deducted because of side effects, leaving you with 12 points of “net health benefit” out of 130 which the app helpfully notes will cost $5000 a month. Other treatments that provide less survival and are cheaper are given a higher score. Guess which treatments you have to use before getting to the most effective treatment covered?
The news is even worse if you have advanced colorectal cancer. The newest drugs add more survival for this deadly disease. But ASCO doesn’t think it’s worth more than 16 points. Deduct 20 points because ASCO doesn’t like the side effects (rashes, nausea, fatigue) and you’re in negative territory. According to ASCO, that treatment has no clinical value at all. And the advances Dr. Evens mentioned aren’t even measured. And they won’t until randomized trials that take years to organize and complete are published.
It’s sad and ironic. You lead a 30-year effort to eradicate guinea worm disease around the world. The disease is not fatal but extremely painful and debilitating. In 1986, there were an estimated 3.5 million cases in 21 countries in Africa and Asia. Your effort was criticized as not cost-effective from the start. You ignored the bean counting because it only focused on 2-3 measures of value. (Sound familiar?)
Today, that number has been reduced by more than 99.99 percent, with the vast majority of cases remaining in South Sudan.
It’s a good thing it was you – not the alliance of insurers and ASCO – tackling that challenge. Unfortunately they are putting a price tag on whether you live or die. Maybe you can change that. A grateful nation is pulling for you to win one more campaign.