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.
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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.
That's when I decided to write about this nightmare situation. I called UHC for comment. Cheryl Randolph, spokesperson for UnitedHealthcare, was extremely apologetic for what she called the "ridiculous runaround'' I had been given. She said that whether the Mayo Clinic is in network is an "easy question'' that should have an easy answer. "I don't know why you were given three different answers. I apologize for that. It is unacceptable.'' She promised she would look into that and "help me figure out the best way to get you to participate in that trial.''
Within 24 hours, I got a call from a woman at UHC who said she was handling my case. I'm grateful for the quick response.
But the insurance company couldn't really explain why UnitedHealthcare's system was so convoluted and inefficient. Or why they would not accept information from the doctors most familiar with my case. Or why I was unable to talk with anyone at UHC who actually had any familiarity with my case. Or why this whole process was taking a month, while my cancer advances day by day.
It made me wonder: What about those people who can't call up corporate communications and say, "I used to work for The New York Times, who switched me over to your coverage, and now am writing a piece for AOL, and I'd like you comment about the unbelievable trouble I'm having getting approval for a treatment that may help to save my life"?
Through my journalism experience and my health problems alike, I've become pretty skillful at navigating insurance companies. One of the first things I did when I tried to communicate with my new insurer was to ask for a case manager. All the major companies have them for high-maintenance people like me. Here, from my notes, is the saga that unfolded:
Jan. 25: After several transfers, I get Alice in Cancer Resource Services. She says she's never heard of a case manager, I should call Customer Service. That's when I'm transferred to three people who give me totally different answers as to whether Mayo Clinic is in-network or not. I've been on the phone for 45 minutes and feel completely spent.
Jan. 26: I try again and repeat my information for several people. The last one (was it Margaret or Vera?) sounds pretty certain that Mayo is out of network but says it could be considered in-network if the trial I want is not offered anywhere else. She creates a file for me and gives me a reference number to check on the status. I begin to think I've actually started this ball rolling.
Jan. 29: After three days, I call to see what's happening. I finally get Customer Care and give them my reference number. They tell me my case is pending.
Feb. 2: UHC actually calls me! Maybe there's been some progress. But it's only Carole, who manages transplant patients. I ask why she is calling me; I've already had a transplant and I'm not looking to have another. Oh, she says, they sent me your file.
Feb. 3: Lydia phones. She says she needs the diagnosis codes for my illness, all the codes for procedures I would be having in Phoenix and the name of the doctor who will be treating me there. Since I've never been, I have no idea. She can't take any information from my Mayo doctor in Rochester because he's not a network provider.
Concluding the call, Lydia says she's canceling out the earlier information because she will get new data from my local (approved) oncologist. Thank God he is in the network.
Feb. 15: I call to check on my case. They tell me it has been deleted from the system because it didn't come from a preferred provider. If I didn't know it before, I think I'm really in trouble now.
Feb. 16: The helpful woman in my doctor's office calls to say she has supplied the insurance company with all the information they requested, but they told her the next thing I need to do is get a case manager. Oh dear, you mean a case manager like the one Alice told me three weeks ago she had never heard of before?
Feb. 16: I call UHC. You can't have a case manager, I'm told. Your doctor's office needs to call us first and talk to an intake coordinator. That starts the "clinical gap" request, they say. After that information is entered in the system, a case manager will be assigned. I call my doctor's office and leave a message that I can't get a case manager, they need to do it for me to get the ball rolling.
Feb. 19: I call UHC to see if a case manager has actually been assigned. The person I've been transferred to tells me they still need clinical notes from my doctor before they can get a manager on the case.
Feb. 19: My doctor's office calls again: UHC says the Mayo Clinic in Phoenix has no record of me in their files. Well, duh! I haven't been there yet. Now let's see if I've got this straight: I can't go there until UHC approves it. UHC can't approve it until all the requisite information has been filed and a case manager assigned. But I can't have a case manager until the intake coordinator has entered the case in the system. And the intake coordinator hasn't entered the case because the hospital where I'm appealing to go has no record of me. I don't know whether to scream or cry!
Feb. 19: I call Mayo in Phoenix and talk to the scheduler for my trial. Within minutes – and without talking to any robotic voices – I have gotten myself entered into Mayo's system. Now I just need to tell UHC that if they call again, they will find me there.
Feb. 19: I call UHC back. After the litany of hurdles, I get Jay, who actually gives me a number for care coordination and tells me he'll transfer me there. I am transferred, and I get the computer screener all over again. Exasperated, I hang up and call the direct number. I still get a robot, but at least it identifies itself as the care coordination department. And finally, I get Diana. I think of Paul Anka. Oh please, please Diana.
I tell Diana I'm calling about my appeal to get into a clinical trial and try to give her the reference number that was given me in a previous call (the second reference number, because the first says my case has been canceled). Diana just needs to get some information first. Here we go again – name, number, date of birth, etc. After the drill, she asks sweetly, Now what were you calling about? I say my appeal to get into a clinical trial. A clinical what? she asks. I'm not familiar with that. Oh my God, I blurt out, unable to help myself. She becomes defensive as I labor in distress to explain what a clinical trial is. Still sounding confused, she asks me, Are you a patient? Yes, I say. Well, she says, that's why I'm not familiar with your terminology.
I try again: I just want to give you some information about my appeal. Oh, she replies, then you've got the wrong department, because we don't handle any appeals. I'm about to explode, but I say, as calmly as I can, It's not an appeal of a decision; I'm making a request for a decision to go to a trial at the Mayo Clinic. Well, she says in a slightly indignant tone, we don't even contract with the Mayo Clinic. Hyperventilating, I say, please, please, Diana, just take the reference number and read the information so you'll know what this is about!
I give her the number and she puts me on hold, hold, hold. When she returns, she sounds smugly satisfied, like she's just discovered the simple answer to a question I've made unnecessarily complicated: Well, this is just a request for medication!
Aye-yi-yi! Yes, I say, the medication that's given in the clinical trial. A request for you to let me go to the Mayo Clinic so I can have this drug that will save my life but has not yet been approved for market. Oohhh, she says, in a voice that belies the light bulb that's just gone off in her head, what you're asking for is a gap exception!
EXACTLY, I nearly shout out. Then, somewhat patronizingly, she says, Let me explain to you the process for that. You need to get your doctor to make a referral, your doctor has to call to set up what we call a clinical gap request. I cut her off before she can finish. Yes, I've done that, I've done all that, I say between gritted teeth. I can hardly keep from shouting. His office and yours have been talking for weeks! I just wanted to give you the name of the person to call at the Mayo Clinic so you can see that I'm in their system, awaiting an answer from you to get into their clinical trial!
She says, Well the reviewer working on it says she's waiting for a call back from your doctor's office for clinical information. The reviewer working on it? Someone is actually working on it? Who is that person? Can I get her number and speak directly with her? Unfortunately, she tells me, "she's not going to speak with no one but the provider.''
I'm in despair. I think back to last year, when I signed up for early Social Security. It took one phone call. Fifteen minutes max. Everything was loaded into their system and I could look it up online. All the information was there. It was all correct. My checks come like clockwork on the same day every month. I've never had one problem. Last year my husband signed up for Medicare. Same experience. No problems, no complaints. This is your government at work. Some bureaucrats know how to get it right.