Criminal Health Care: My Experience in Insurance Company Hell

Health care has become the top domestic issue for most Americans this electoral season -- and for good reason. By nearly any measure, the system simply does not work. Heart-wrenching stories of its shortcomings can be read ad infinitum. And while they rightly evoke feelings of empathy and anger, experiencing the system's brokenness first-hand -- as I recently did -- gave me a new understanding of its horror.

I have cystic fibrosis (CF), a serious genetic disease that primarily affects the digestive and respiratory systems. My lungs create excess mucus that is thicker than it should be. This means I am more susceptible to everyday lung infections -- such as the flu or pneumonia -- which can, in turn, be life-threatening.

Despite amazing advances in medical research over the last couple decades, the average person with the disease still does not live to see his or her 40th birthday. The best we can do is stick to long, arduous treatment regimens -- and trust, often in vain, that the U.S. medical system will help us do that.

Cystic fibrosis is a rare ailment; there are only about 30,000 cases in the United States. In business terms, this means that medicines used to treat CF are developed for a very limited market. And since insurance and pharmaceutical companies need to make their billions, the costs of the various drugs that I must take on a daily basis are insanely expensive. (Last spring, I calculated that my prescriptions cost more than $60,000 annually.)

That makes me a life-long cash cow for the drug companies and, paradoxically, an enormous liability for any insurance company -- one that ideally should be expunged as quickly as possible. Indeed, I'm the worst kind of member to have on the rolls: someone with a chronic illness whose medical expenses, as long as a cure remains elusive, will always be exorbitant. I show no profit potential.

Not surprisingly, then, navigating the health care system has never been easy for me. Even when the system is working as smoothly as it can, I have had to jump through countless hoops. Those are an unavoidable and exhausting part of this tortuous circus. But my experience in insurance company hell reached a new low last year. Last November, I spent weeks politely jostling my inept doctor's office and insurance provider to get one of my prescriptions filled. Nobody seemed to take me seriously or put any priority on my case, even as I stressed that I was quickly running out of my medicine. To my disbelief, I began to realize that I did not have intrinsic value in their eyes, but had effectively been reduced to a "member number" and data on their seemingly endless medical forms. And when your needs become too expensive -- since the price of life apparently can now be calculated -- the companies find every possible way to dodge their obligation, playing the role of absentee landlord or deadbeat dad to perfection.

The system's labyrinthine bureaucracy serves to diffuse responsibility for those who must do the dirty work and to demoralize those forced to navigate it. People who are caring and decent in their personal lives dispassionately read the scripted reasons why they are denying medicines -- which, for you, may literally mean the difference between life and death -- over the phone.

"That drug is not on our list," she says.

"We need more clinical proof that you need this medicine."

"The review can take up to 72 hours."

"I'm sorry, but that is our policy."

Armed with excuses, the barricades are erected. The refrain sung. Never mind that you have a valid prescription from a doctor on their plan. Never mind that he called to authorize it and filled out the requisite "medical necessity form." Never mind that you've been on that particular medicine your entire life. That is our policy.