The phone rang in my office a few days ago. It was a reporter who wanted a comment on a study showing that a very low percentage of patients with colorectal cancer receive adequate follow up care. Maybe 1/3 of people who finish therapy actually are able to receive the regular check-ups that can warn of a possible recurrence.
How can I possibly comment on that? This is outrageous beyond comprehension! Do I respond with a scream? With sobs of frustration? Do I rant and rave? Demonstrate weeping and gnashing of teeth?
The biggest fear patients have, once they have finished treatment, is this: “Will the cancer come back?” Once your body has betrayed you and turned against itself, you never really have confidence that it won’t happen again. So patients look to those follow up visits with trepidation and fear. And when they hear the news that the scans all look good, it is like being born again to new hope.
Now this study shows that many patients never get those follow up visits. And why? They can’t afford them. Their provider won’t cover it. The doctor fails to order the tests. The situation is absurd and just fundamentally wrong—people who have already been dealt the bad hand that is cancer now being denied the tests that will let them know if they are OK or not.
The reporter asked, “Does this study resonate with what you know in working with patients?” Answer—absolutely! I cannot count the times I have heard of patients having to fight with their provider to cover a PET scan or some other follow up test.
Then the tougher question, “Why do you think this is happening?” Why, indeed…
Here’s what I said: “We can point to a lot of factors in why this is happening. The status of our health care system. Providers who make decisions without understanding the medical impact of those decisions. Doctors who don’t have enough time to continue the follow up.
“These factors, though, are symptoms of an underlying problem, which is this: colorectal cancer has not received the level of attention it deserves and needs in order to assure that everyone involved in this disease knows they are working in the spotlight. We have not generated enough passion, energy, media buzz, moral outrage around this highly prevalent, yet highly preventable disease. Because of this people can experience crappy, unconscionable care and—in many cases—not even know they are getting less than the best. We need a lot more voices, and a lot more avenues by which those voices can be heard, in order to change the landscape for patients.”
Here’s a start. If you have a story about having trouble—for yourself or a loved one—getting the proper follow up tests done to monitor for possible recurrence, please send me a note. Just a couple of sentences outlining your experience. With enough stories and enough voices we can push the media to report on this more. Maybe, together, we can crank up the spotlight a bit.
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