Sam Hill
2008-03-11 13:52:36 UTC
Criminal Health Care: My Experience in Insurance Company Hell
By Eric Stoner, AlterNet. Posted March 10, 2008.
One cystic fibrosis patient shares his first-hand experience with our broken
health care system.
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.
At one point I was on the phone from the moment I woke up until the
company's office closed for four days straight. I paid close attention to
their complicated explanations for the hold up and tried my hardest to
follow their instructions. Once one obstacle was cleared, new ones
faithfully arose. Even making the financial argument that if I didn't get
the treatment I would have to go to the hospital, which would be vastly more
expensive for the insurance company, seemed to have no effect.
"I guess you should go to the emergency room then," I was callously advised
more than once. Did they realize that they were talking to a real person
about his health and not some trivial matter? Did they get what an utter
waste of taxpayer dollars that would be?
Completely desperate, I spoke with a friend who is a lawyer. He was eager to
take action. "I'm always ready for a good fight," he reassured. "We can send
them a nastygram," he explained, which would put pressure on the company to
resolve this before it gets ugly. His confidence and support put me at ease.
The following afternoon, an insurance representative called to say that the
medical director had finally approved my treatment. There was no
explanation. The extensive documentation that they had been demanding was,
in the end, unnecessary, as I suspected. I rushed to the pharmacy. But by
the time I was able to fill the prescription, I had already gone three days
without it.
My fragile health was put at risk because some faceless suit wanted to save
a buck and was testing to see how much of a fight I would put up. (I was
told more than once by people who had their own horror stories with health
insurance that companies hope you'll just give up. Whether it's true or not,
that is definitely how it feels.) It was an emotionally exhausting process
that I hoped I would never have to endure again.
Unfortunately the fight wasn't over. A couple weeks later, the insurance
company rejected another medicine. It was déjà vu, except this time I was
weary. I did not know if I had the stamina for another protracted fight. But
when it comes to your health, you have little choice. I was forced to pick
up the phone and make the exasperating calls all over again. After nearly
two weeks of pleading -- with little to show for it -- I was at my wit's
end.
In talking with a friend who is an expert on New York's different public
health insurance programs, he said that he believed the company was
technically in violation of the law. This was the final straw. With the
confidence of someone who has nothing left to lose, I called the company and
demanded an answer by the end of the day.
"I have spoken with a lawyer," I told them, "and I am ready to take action."
Those magic words worked wonders. They snapped to attention and immediately
began to work on my case. I even started receiving periodic updates by phone
about their progress. It was as if I were talking to an entirely different
company, one that actually cared about its customers. The about-face was
striking. By the end of the day, I received a call from the representative I
had been dealing with. "Go pick up your medicine," he said. "It has been
approved."
My crisis was resolved, but what about the people who don't have my
advantages? What about the immigrant, whose first language is not English?
What about the mother who works two jobs while raising children? As a
writer, I can generally make my own work hours. As an activist, I am
accustomed to long battles and challenging the powers that be. I have
important resources, including legal help, at my fingertips. But because the
majority of people in need of government-assisted health care are poor, they
rarely have such backgrounds or support networks. That leaves insurers in
positions of complete power, able to ignore the cries of the poor with
little fear of repercussions.
It could be different. Several years ago, while living and studying in
Spain, I experienced one alternative. To get my medicines, I filled out
paperwork for twenty minutes at a hospital in Valencia. Without further
hassle, I was able to pick up the same name brand prescriptions that I take
in the United States, at one-tenth of their cost. Even though I was not a
citizen and did not pay taxes, the Spanish government graciously footed the
rest of the bill. They simply have different priorities, one being taking
care of whoever happens to live there.
With our great ingenuity, a better, more humane system is not out of reach.
Health care should not be subject to the whims of profit-hungry
corporations. It must be recognized as a universal human right. To put
people through such tumultuous trials for a basic necessity is criminal.
Life is difficult enough.
By Eric Stoner, AlterNet. Posted March 10, 2008.
One cystic fibrosis patient shares his first-hand experience with our broken
health care system.
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.
At one point I was on the phone from the moment I woke up until the
company's office closed for four days straight. I paid close attention to
their complicated explanations for the hold up and tried my hardest to
follow their instructions. Once one obstacle was cleared, new ones
faithfully arose. Even making the financial argument that if I didn't get
the treatment I would have to go to the hospital, which would be vastly more
expensive for the insurance company, seemed to have no effect.
"I guess you should go to the emergency room then," I was callously advised
more than once. Did they realize that they were talking to a real person
about his health and not some trivial matter? Did they get what an utter
waste of taxpayer dollars that would be?
Completely desperate, I spoke with a friend who is a lawyer. He was eager to
take action. "I'm always ready for a good fight," he reassured. "We can send
them a nastygram," he explained, which would put pressure on the company to
resolve this before it gets ugly. His confidence and support put me at ease.
The following afternoon, an insurance representative called to say that the
medical director had finally approved my treatment. There was no
explanation. The extensive documentation that they had been demanding was,
in the end, unnecessary, as I suspected. I rushed to the pharmacy. But by
the time I was able to fill the prescription, I had already gone three days
without it.
My fragile health was put at risk because some faceless suit wanted to save
a buck and was testing to see how much of a fight I would put up. (I was
told more than once by people who had their own horror stories with health
insurance that companies hope you'll just give up. Whether it's true or not,
that is definitely how it feels.) It was an emotionally exhausting process
that I hoped I would never have to endure again.
Unfortunately the fight wasn't over. A couple weeks later, the insurance
company rejected another medicine. It was déjà vu, except this time I was
weary. I did not know if I had the stamina for another protracted fight. But
when it comes to your health, you have little choice. I was forced to pick
up the phone and make the exasperating calls all over again. After nearly
two weeks of pleading -- with little to show for it -- I was at my wit's
end.
In talking with a friend who is an expert on New York's different public
health insurance programs, he said that he believed the company was
technically in violation of the law. This was the final straw. With the
confidence of someone who has nothing left to lose, I called the company and
demanded an answer by the end of the day.
"I have spoken with a lawyer," I told them, "and I am ready to take action."
Those magic words worked wonders. They snapped to attention and immediately
began to work on my case. I even started receiving periodic updates by phone
about their progress. It was as if I were talking to an entirely different
company, one that actually cared about its customers. The about-face was
striking. By the end of the day, I received a call from the representative I
had been dealing with. "Go pick up your medicine," he said. "It has been
approved."
My crisis was resolved, but what about the people who don't have my
advantages? What about the immigrant, whose first language is not English?
What about the mother who works two jobs while raising children? As a
writer, I can generally make my own work hours. As an activist, I am
accustomed to long battles and challenging the powers that be. I have
important resources, including legal help, at my fingertips. But because the
majority of people in need of government-assisted health care are poor, they
rarely have such backgrounds or support networks. That leaves insurers in
positions of complete power, able to ignore the cries of the poor with
little fear of repercussions.
It could be different. Several years ago, while living and studying in
Spain, I experienced one alternative. To get my medicines, I filled out
paperwork for twenty minutes at a hospital in Valencia. Without further
hassle, I was able to pick up the same name brand prescriptions that I take
in the United States, at one-tenth of their cost. Even though I was not a
citizen and did not pay taxes, the Spanish government graciously footed the
rest of the bill. They simply have different priorities, one being taking
care of whoever happens to live there.
With our great ingenuity, a better, more humane system is not out of reach.
Health care should not be subject to the whims of profit-hungry
corporations. It must be recognized as a universal human right. To put
people through such tumultuous trials for a basic necessity is criminal.
Life is difficult enough.