Insurance Nightmare: Why We Need A Better System

by: janet battaile

Late last year, I learned two things at about the same time: My cancer was coming back, and I had gotten a new insurance plan. Since then, I’ve learned something else: It’s far easier to deal with my disease than with my new insurers.

I have multiple myeloma, a cancer of the bone marrow that’s incurable but treatable. I’ve kept it at bay by aggressively pursuing the most advanced treatments available. By the time I relapsed in December, I had multiple bone fractures, was in significant pain and trying to figure out what to do next. Insurance was the last thing on my mind. I made an appointment in the new year to see the doctors who know me best, the myeloma experts at the Mayo Clinic.

That was my first mistake. Mayo Clinic, it turns out, is not part of the network of UnitedHealthcare, one of the nation’s largest health insurers. UHC took over my coverage on Jan. 1 because the company I retired from, The New York Times, was looking to save money. UnitedHealthcare, it also turns out, does not have to pay for any treatment it hasn’t approved in advance. But I didn’t know that. So because I rushed off without notice to consult a doctor I’ve seen for the last decade, I can’t calculate what that might cost me.

Keeping your own doctor is one of the big concerns in the debate on overhauling the nation’s health care system, an effort that appears to be on life support as President Obama convenes a summit Thursday to try to patch together a bill that Republicans can sign on to. Another threat raised repeatedly by opponents of the Democrats’ plan is that it will create a nightmare system where government bureaucrats make all the decisions.

Bureaucrats? There are plenty of those in the private sector, too. But I should be so lucky to get one. All I get when I call UHC is the phone bank. Over the last month, I’ve called at least a dozen times and have never once talked to anyone who is actually reviewing my case or could make a decision about approving it. In fact, when I asked to speak with someone in the Clinical Coverage Department, I was told: “They don’t have a number.” Later, when I asked to speak with the person reviewing my case, the answer was, “She can only speak to the provider.”

What I want is to get into a clinical trial for an experimental drug called pomalidomide, the successor to Revlimid, the drug that put me in remission for the last three years. Doing so would not only save my life but actually save UHC money, as Celgene, the manufacturer, will supply the drug for free. Revlimid had cost my previous insurer $70,000 a year. The first drug Celgene marketed, thalidomide, was my initial treatment, in a clinical trial at the Mayo Clinic in 2000.

The pomalidomide trial would mean spending a month at Mayo headquarters in Rochester, Minn., or its branch in Phoenix. So when I returned from Rochester, I knew it was vital to get my insurance company on board. I called UHC to ask the obvious question: Are either of these hospitals in your network? Three people gave me three different answers. The first said Rochester is but Phoenix isn’t. The second said both are in network. The third said neither is in network. I said, Who am I supposed to believe?

That was only the beginning of the struggle to communicate with my new insurers. At one point, after three weeks of conversations, I was told that information about the trial that I’d given UHC had been deleted from the system. UHC wouldn’t take it because it came from an unauthorized doctor. It was then that I thought I might actually die from toxic insurance company stress syndrome (TICS) before the myeloma killed me!

Every UHC phone call begins with the same ordeal: Before you can talk to a human, you have to be screened by a computer. Are you calling as a health professional? (No.) OK, what’s the member ID you’re calling about? And what’s your date of birth? Now, do you want claims, benefits or something else? Benefits? Sure. What type? Medical, prescription drug, mental health or substance abuse?

It’s enough to drive you to substance abuse.

Once you get past the computer, you get a human, who asks many of the same questions. Each time, I patiently explain my situation. Usually I get transferred to someone else, where I start all over again. I never get to talk to the same person twice. And I can’t call back because no one will ever give me a direct number. “Just call the number on the back of the card” is the standard answer. In my myriad phone calls, I’ve been transferred to people in Customer Service, Cancer Resource Services, Care Coordination, Intake Coordination and Clinical Coverage. The last person I spoke with didn’t even know what a clinical trial was. I freaked out.