I’ve been a cancer patient for more than 21 years. In November 2003 I was diagnosed with multiple myeloma, a rare and incurable—but fortunately so far treatable—form of blood cancer.
Since that time, I’ve undergone four rounds of radiation therapy; a six-month course of weekly intravenous immunotherapy (followed by seven years of a maintenance level of that therapy taken in pill form); second and third rounds of immunotherapy involving next-generation versions of the previous drugs I was on; six years and counting of monthly IV infusions of an agent used to boost my immune system, which has been compromised both by my disease and other treatments used to combat it; two rounds of chemotherapy in preparation for a two-week hospitalization required to administer a risky, cutting-edge treatment called CAR-T therapy, and, last but by no means least, the CAR-T therapy itself.
During that time, I have spent hundreds, if not thousands, of hours in doctor’s offices and hospitals. It’s fair to say I’m a highly experienced patient. And one thing I’ve learned is that navigating the medical world is more difficult than ever.
At a time when medicine is becoming ever more specialized, doctor shortages are increasingly common—just identifying specialists who a) are accepting new patients and b) accept your insurance is difficult. Some insurance companies offer systems that can help you find a practitioner, but in my experience the information is often incorrect or out of date. You’ll call dozens of providers before you find someone suitable—and that’s after you’ve sifted through endless lists of choices in the first place. It’s a time-consuming and frustrating process.
As hospitals, doctor’s offices and testing facilities have cut back on staff, administrative workers are more taxed than ever. Scheduling appointments and tests—often when you’re physically and emotionally unwell—has become more burdensome. Getting placed on a lengthy (or sometimes endless) hold or being directed into the abyss of an automated system is increasingly common, and maddening. The problem is even more frustrating and upsetting if you’re trying to reach your physician not just for a routine appointment but because something is urgently wrong.
And as health insurers also seek ways to control costs and boost profits, it can take longer than ever to obtain prior authorization for tests, treatments and medications. While some doctors and insurers offer care coordinators and others who can help with that process, many others don’t, leaving patients to navigate that maze themselves.
I have personally had to appeal scores of prior-authorization denials. As anyone who has gone through the process knows, it can be Kafkaesque. Essentially, your doctor’s office needs to convince the insurance company that the test or treatment in questions is, in fact, necessary. That involves the doctor’s office sending a letter to the insurance company making that case, along with the appropriate medical records.
That process can take days or weeks under the best of circumstances, and as often as not something goes wrong. Ultimately the burden falls on the patient to resolve any issues. The time that takes and the stress it brings can be considerable. You often have to call or email the doctor’s office and the insurance company repeatedly. You spend countless hours on hold. You are directed to the wrong person or department. The person you reach isn’t sure why the procedure was denied. Yes, that does make it impossible for your doctor to appeal the case … Yes, they understand you’re frustrated and angry … They’re sorry, but there’s nothing else they can do at this time.
I have spent hundreds of hours fighting pre-authorization battles and have tried every trick I can think of—calm reasoning; obsequious kindness; angry screaming—to resolve them.
What I have discovered is this: The person on the other end of the line has to care. Sometimes they do, sometimes they don’t. It turns out the secret to navigating the pre-authorization maze, and the American health insurance system in general, is to cross your fingers.
Patient portals are another issue. Doctor’s offices and hospitals increasingly push people to use them to make appointments, pay bills and access test results. While the portals are intended to make life easier for patients, they often do just the opposite. Take test results. For years, the only way to obtain them was by speaking to your doctor—they would call you or you would call them. That could certainly be fraught.
The stakes are raised further, though, when you’re being served notifications that may have to do with your fundamental well-being, possibly even your life. As is the case with so many other digital innovations, it’s almost impossible to resist activating these alerts; if you think it’s hard to resist opening the Facebook app when you see the little red circle with a number inside it, try ignoring the notice that your biopsy results are in. If your condition is complicated, you can get dozens of results in a day. Seeing all of the pings and reading all the results can be overwhelming.
Medical test results are often complicated. Even if you’re well versed in your disease, it can be hard to understand the terms used (“CMV DNA PCR QUANT,” “fibrin degrad-dimer,” and “TSH w/free T4 reflex” were a few head-scratchers I learned of during one of my hospital stays alone). Trying to interpret them without a doctor can lead to confusion, misunderstandings and unnecessary worry.
Every now and then, I don’t want to know a result when my phone pings. Maybe I’ve got a family vacation coming up and I don’t want to know if something is wrong until after I get back. Maybe something else stressful is happening, and I’m not prepared to take on more bad news. In those cases, I’ll wait for a time—an hour, a day, a week—before I open the portal to learn my fate.
But those occasions are rare. Ignoring a medical portal message takes a level of digital willpower that’s difficult to summon.
For years, the medical establishment has warned us of the dangers of stress, noting that it can lead to everything from heart attacks and strokes to cancer. If that’s the case, why are they making patients’ lives more stressful, not less, every day?
Jonathan Gluck is a writer and editor whose work has appeared in The New York Times and The Washington Post, and been recognized with multiple National Magazine Awards. He was deputy editor of New York magazine for ten years, after which he worked as managing editor of Vogue. His new book, An Exercise in Uncertainty: A Memoir of Illness and Hope, is out now.
