How I Got a Pancreatic MRI for Free – And How You Might, Too (or at a Reduced Cost)
By: David Sharp
Since finding out last year that I have a BRCA1 germline mutation, I’ve been keenly aware that it raises my lifetime pancreatic cancer risk to nearly 5%, compared with 1.7% for the general population.
The overall five-year pancreatic cancer survival rate is only about 13%, largely because this aggressive, stealthy cancer is often diagnosed after it’s already spread. For that reason, my medical oncologist recommended an annual pancreatic MRI to catch it early, just in case. That made abundant sense to me, so I scheduled the scan at OHSU, a major medical center here in Portland, Oregon. I assumed that between my BRCA1 mutation and pancreatic cancer’s lethality, original Medicare—my health insurer—would pick up the tab, which would otherwise cost me a few thousand dollars.
Turns out, Medicare probably won’t.
Why not? In part, Medicare relies on guidelines from major medical societies to determine what it will cover. Unfortunately, those societies have failed to reach the kind of strong scientific consensus that Medicare likes to see when deciding whether to pay for a procedure or test. The American Society for Gastrointestinal Endoscopy recommends pancreatic cancer screening for BRCA1 carriers regardless of family history, citing research suggesting that limiting screening to people with a family history could miss two out of three pancreatic cancer cases.
By contrast, NCCN guidelines recommend pancreatic screening for BRCA1 carriers only if they also have a close relative with pancreatic cancer. Having no family history of pancreatic cancer would normally be good news. But my lack of a family history worsens my chances of convincing Medicare to ante up.
What’s more, Medicare would view my pancreatic MRI as a “screening” rather than “diagnostic” test because I have no pancreatic cancer symptoms or diagnosis. Medicare automatically covers screening for several other cancers, including prostate, breast, and colon. But pancreatic cancer screening for a BRCA1 patient like me isn’t one of its specifically listed preventive benefits, further reducing the odds that Medicare will pay.
To double check that, I contacted many OHSU staff members and several experts in hereditary cancer and health insurance, including Pamela Munster, M.D., a top BRCA expert at Stanford University; Lindsay Byrne, a genetic counselor at The James Comprehensive Cancer Center (Munster and Byrne recently appeared in a highly informative AnCan webinar on genetic counseling for families: https://www.youtube.com/watch?v=2UvlUdKPKV8); Lisa Schlager, vice president for public policy at FORCE (an organization that assists people facing hereditary cancer); and Amanda Goodstadt, a senior staff attorney at Triage Cancer (which educates people about legal, insurance, and other issues that arise after a cancer diagnosis). Their view: Medicare isn’t likely to help.
I next looked into clinical trials that might provide a pancreatic MRI for free. Several are currently recruiting BRCA1 carriers, but I kept failing to qualify for the most ironic of reasons: I had either too much cancer or not enough. In some cases, my prostate cancer history excluded me; in others, I lacked the required family history of pancreatic cancer.
Then I tried another route: I canceled the MRI and applied for OHSU’s financial assistance program. My wife and I have little taxable income because we’re delaying Social Security to increase the size of future benefits and living on retirement savings and investments in the meantime. Two weeks after applying, I received a letter from OHSU stating that it had granted me 100% financial assistance for the next 12 months. After that, I can apply again. Medicare’s restrictions suddenly became irrelevant.
I celebrated for about five seconds. Then I read the fine print. OHSU’s policy had restrictions of its own, including certain services considered non-covered or medically unnecessary under Oregon Health Plan rules. I thought, “Oh, shit. Another bureaucratic quagmire.”
It took more than a dozen calls to find the right person, but eventually I spoke to OHSU’s revenue cycle operations manager for the Department of Surgery. Her title is a mouthful, but she turned out to be the key individual in the OHSU hierarchy who could help. I explained my predicament and told her I didn’t feel comfortable proceeding with the pancreatic scan without written confirmation that OHSU’s financial assistance program would cover it.
A few hours later, a written guarantee appeared in my patient portal. Success! My MRI is now rescheduled for December 4, and it’s on the house. Because BRCA1 also raises the risk of male breast cancer, I can use the same financial assistance for an oncologist-recommended mammogram, skin cancer check, and upper endoscopy.
Obviously, this solution won’t work for everyone. And it may not even work for me in a couple of years, once my wife and I start receiving Social Security and no longer qualify for financial assistance. But my hunt for a free pancreatic scan taught me the following seven strategies that may reduce my health care spending in the future—and may save you some bucks now:
1.) Ask hospitals about financial assistance and discounts. OHSU, for example, offers a self-pay rate that cuts 35% off the bill for uninsured patients. 2.) Look for clinical trials that cover the cost. I struck out, but you might not. 3.) Don’t rely on optimistic assurances from hospital employees that your insurer will pay; they’re often wrong. 4.) Don’t waste time seeking guidance through original Medicare’s live chat. I found it useless. 5.) If you’re promised free or discounted care, get it in writing before the procedure—and check the exclusions. 6.) Don’t assume your insurer will pay simply because your doctor strongly recommends a procedure. 7.) Most importantly, keep knocking until the right door opens.
—David Sharp