Girl Allergic to Food; Insurance Won't Pay for her Supplement

[Ebowed]

Yorktown girl can eat only one thing: costly formula that insurance won't cover
By SUSAN ELAN
THE JOURNAL NEWS

(Original publication: December 28, 2007)

YORKTOWN — Three-year-old Hannah Devane is allergic to food. Not the kind that makes kids spit out their broccoli; the kind that can kill.

The Yorktown preschooler has a condition called eosinophilic esophagitis, a severe food allergy that causes a type of white blood cell to congregate in the esophagus, the tube that carries food from the mouth to the stomach, damaging the tissue when she eats.

A doctor-prescribed formula has allowed Hannah to grow to a robust 40 pounds, a normal weight for a child her age. Without it, Hannah could wind up with a feeding tube.

But the insurance program that covers her family through her father's job as a New York City police lieutenant has stopped paying for the formula, which costs $1,200 a month. Food supplements and other over-the-counter items are not covered under the family's insurance, the prescription plan administrator said.

Arriving home hungry from day care, the blond, curly haired Hannah stretches out on the sofa with a bottle of formula.

"Our daughter has a disorder where she needs the formula to live," said Jessie Devane, 37, a registered nurse. "There is tissue damage if it is not treated. The treatment is no food. The insurance company won't even listen to Hannah's doctor."

Dr. Barry Wershil, a pediatric gastroenterologist at The Children's Hospital at Montefiore in the Bronx, doesn't hide his indignation over the insurance hurdle.

"This kid can't eat food," he said. "This formula is her only source of nutrition. The insurance (provider) saying they will not cover it is a travesty. It's like telling a diabetic they can't take insulin."

Hannah's food allergy appeared early. She made strange, hacking sounds like a cat coughing up a fur ball when she drank baby formula. There were frequent bouts of violent vomiting. Things got worse when she started eating baby food, and doctors thought it might be reflux disease.

"She would sit in her high chair and her eyes would roll back in her head," Jessie Devane said. "She would arch her back and she would seem to go into some kind of trance. After about 40 seconds it would stop. I'm a nurse, but I had never seen anything like it."

Hannah had her first upper endoscopy before she was a year old. Under general anesthesia, a flexible tube with a light and camera at its tip was inserted down her throat to look inside her esophagus, stomach and part of the small intestine. A biopsy showed that eosinophils, white blood cells that play a role in fighting infection, were attacking her esophagus.

Over time her esophagus could harden, making it difficult to swallow, Wershil said. If the scarring got bad enough, she would have to be hospitalized so her esophagus could be dilated. Repeated scarring could mean the esophagus might crack, Wershil said. In some cases, people wind up needing a feeding tube, he said.

There is no cure for eosinophilic esophagitis. It is treated by eliminating foods that produce an allergic reaction, and sometimes with steroids, which have serious side effects. Determining which foods are the culprits is a lengthy and arduous process involving food trials followed by endoscopies every three to six months.

Her parents were devastated when they learned what lay ahead. A second opinion from Cincinnati Children's Hospital Medical Center, which specializes in the condition, confirmed the diagnosis.

Hannah would have to stop all food, except the hypoallergenic formula, to give her esophagus time to heal. Even the bananas and flavoring that had made Elecare, an amino acid-based formula, palatable would have to go. Hannah would continue drinking the formula out of a baby bottle to help bypass the taste buds.

"It took a lot of work, screaming and yelling," Jessie Devane said.

But she wouldn't give up when a feeding tube might become the only alternative.

Nourished only with Elecare, Hannah's esophagus became free of inflammation, and the food trials began.

Chicken, potatoes and pasta came first. After a month, green beans and squash were added. Another endoscopy showed the eosinophils had returned.

Hannah switched to pork, broccoli, corn, carrots and applesauce. Those failed too.

"We have been doing this for two years and we are no closer to finding a solution," said Jessie Devane, as she fed her 6-month-old daughter, Sarah, who has begun to show some of the same symptoms as Hannah.

Now Hannah's diet consists of rice, pears and Elecare. She eats frequently because she can't keep food down. When she starts to vomit, she can do it five to six times in a row, projecting with a force that dirties her clothes and bed, her mother said.

Since early November, when Hannah's last case of insurance-covered formula ran out, her parents have spent about $300 a week on Elecare.

Michael Devane works a second job as a security guard to cover expenses. Jessie Devane works three times a week as a temporary nurse. Hannah can't take her formula to day care. She is only permitted to drink water and eat the rice and pears her mother prepares for her. She is ravenous when she gets home, her mother said.

The family had been getting coverage for Elecare because of an error, said Helen Sweeny, the administrator of the self-insured medical benefits fund run by the Superior Officers Council.

"The program would be broke if we tried to cover food," said Sweeny, who has run the program for 32 years.

"This is not a supplement an athlete is taking to build muscle," Wershil said. "It's her only source of nutrition. It's this kid's medicine. For the insurance to consider it a supplement is incorrect and unjust."

...

http://lohud.com/apps/pbcs.dll/article?AID=/20071228/NEWS02/712280372

[Bono]

You don't think this happens in state run systems? Just to give the UK example, NICE denies thousands of NHS patients access to life saving cancer drugs.
Economics and policy making isn't a game of gotcha. You have to show not only that the market is having problems (as far as you can all the current system a market system anyway), but that the state would provide a better solution.

[opebo]

You don't think this happens in state run systems? Just to give the UK example, NICE denies thousands of NHS patients access to life saving cancer drugs.
Economics and policy making isn't a game of gotcha. You have to show not only that the market is having problems (as far as you can all the current system a market system anyway), but that the state would provide a better solution.

The simple solution is a state run system that doesn't say 'no', Bono.  We know where the money is, we just need to redistribute it.

[Bono]

You don't think this happens in state run systems? Just to give the UK example, NICE denies thousands of NHS patients access to life saving cancer drugs.
Economics and policy making isn't a game of gotcha. You have to show not only that the market is having problems (as far as you can all the current system a market system anyway), but that the state would provide a better solution.

The simple solution is a state run system that doesn't say 'no', Bono.  We know where the money is, we just need to redistribute it.

Sure, if you want the economy to collapse. The only way to do that is by means of wealth taxes anyway, so better be ready to pay your share.
Oh, btw, what would guarantee that this state system doesn't deny things to undesirables? And just how exactly does the system encourage progress in quality of care?

[opebo]

Your points are not unreasonable, Bono, but unconvincing to the majority who either have no health insurance or who are extremely insecure in their health insurance status.  The main thing a State system provides is the knowledge that you will at least get SOME care.. better than no care at all under capitalism.

[Ban my account ffs!]

Bono, do you know anything about "quality care"?

Have you ever dealt with American insurance companies or American health care?

It's a huge mess.  People already don't get the care they need and you support "freeing up the market" to improve quality?  The only thing that seems to improve in these situations are profits.

I come from a state with some of the most generous public health insurance programs in the country.  We are also the healthiest state and have the most famous health care facility (the Mayo Clinic) and we often lead the nation in medical research and innovation.

And yet we find room to try and cover everybody.  (Though we still fail at that with 8% uninsured)

I've not dealt with NHS style systems.  But I don't necessarily promote that either.

I propose that the government covers children under 18 (25 if in college), adults that are poor, disabled, or otherwise uninsurable, and seniors over 65.

This would free up the system so that private insurers are only covering healthy, working adults.

This would make coverage universal and take some of the burden off of private insurers.

[David S]

I propose that the government covers children under 18 (25 if in college), adults that are poor, disabled, or otherwise uninsurable, and seniors over 65.

This would free up the system so that private insurers are only covering healthy, working adults.

This would make coverage universal and take some of the burden off of private insurers.

Much of that already exists. Medicare is for the elderly and Medicaid for the poor. The cost of these two programs has grown 100 fold since they were started in the 60's yet we still hear complaints of 45 million people without healthcare. And according to the treasury dept medicare alone is expected to be underfunded by nearly $30 trillion over the next 75 years. Is expanding those programs going to solve the problem or bankrupt the country?

In nearly every other aspect of our lives we take care of ourselves. We buy our own homes, our clothes, our food, our cars and we get by ok. But when it comes to healthcare we expect someone else to pay the bills. That's why we no longer have a competitive free market in healthcare and why prices have skyrocketed out of control.

[opebo]

In nearly every other aspect of our lives we take care of ourselves. We buy our own homes, our clothes, our food, our cars and we get by ok.

No, David, your view is simplistic.  In the first place the owners do not 'take care of themselves', but have their homes, clothes, food, cars, and health care 'bought' for them by those who are required to toil for them.  But even as for worker themselves, who are forced to work for what little materials they receive, it is somewhat inaccurate to attribute their receipts to 'individual action'.

[Ban my account ffs!]

I propose that the government covers children under 18 (25 if in college), adults that are poor, disabled, or otherwise uninsurable, and seniors over 65.

This would free up the system so that private insurers are only covering healthy, working adults.

This would make coverage universal and take some of the burden off of private insurers.

Much of that already exists. Medicare is for the elderly and Medicaid for the poor. The cost of these two programs has grown 100 fold since they were started in the 60's yet we still hear complaints of 45 million people without healthcare. And according to the treasury dept medicare alone is expected to be underfunded by nearly $30 trillion over the next 75 years. Is expanding those programs going to solve the problem or bankrupt the country?

In nearly every other aspect of our lives we take care of ourselves. We buy our own homes, our clothes, our food, our cars and we get by ok. But when it comes to healthcare we expect someone else to pay the bills. That's why we no longer have a competitive free market in healthcare and why prices have skyrocketed out of control.

Name one insurance company that will insure you when you're 75 with failing health.  Name one insurance company that will provide insurance to somebody who cannot afford the premiums or copays. 

Explain how that $30 trillion will shrink if it is invested in a profit-seeking private insurance company.

We need to remove the burden of health insurance from our businesses, because THAT will hurt our economy.

Medical insurance should be provided by the federal government to children, the elderly, the poor, and the disabled through a progressive income tax and a tax on the profit on drug companies and insurance companies that is not set aside for researching new treatments, etc.

The rich will have to take the bite in their paycheck.  And i'm sure they won't mind, because healthy, happy people are more likely to spend money on the things that make them rich than cash strapped, poor, unhealthy people.

If you become rich in this society, you do not do so on your own.  There are countless others that are likely not rich that contributed to your becoming rich.  That alone should justify higher taxes.  But from a pure economical standpoint, everybody does better and the economy grows just fine when the rich are highly taxed (as they were in the 1950s and 60s).

Again, as I've stated in other threads, all income over $400,000 for a household should be subject to a 70% tax rate with no ceiling.  And this would apply to all income earned within the U.S.

This would provide the government with more than enough money to fund social security and medicare (or a new, better program) and start paying down the national debt.

This would lower health care costs for most Americans, who would then pump the economy up with their new disposable incomes by taking vacations, buying more, and investing.

There are many nations that have followed this model and have thrived, including our own at one point in time... but I can think of nary a nation that has thrived on a purely capitalistic "the government, by default, should not redistribute money at all" model.  This is perhaps where economic textbooks and theory differ from the real world.  Or maybe I'm just a Keynesian freak who identifies with the little guy.

[David S]

I propose that the government covers children under 18 (25 if in college), adults that are poor, disabled, or otherwise uninsurable, and seniors over 65.

This would free up the system so that private insurers are only covering healthy, working adults.

This would make coverage universal and take some of the burden off of private insurers.

Much of that already exists. Medicare is for the elderly and Medicaid for the poor. The cost of these two programs has grown 100 fold since they were started in the 60's yet we still hear complaints of 45 million people without healthcare. And according to the treasury dept medicare alone is expected to be underfunded by nearly $30 trillion over the next 75 years. Is expanding those programs going to solve the problem or bankrupt the country?

In nearly every other aspect of our lives we take care of ourselves. We buy our own homes, our clothes, our food, our cars and we get by ok. But when it comes to healthcare we expect someone else to pay the bills. That's why we no longer have a competitive free market in healthcare and why prices have skyrocketed out of control.

Name one insurance company that will insure you when you're 75 with failing health.  Name one insurance company that will provide insurance to somebody who cannot afford the premiums or copays. 

Explain how that $30 trillion will shrink if it is invested in a profit-seeking private insurance company.

We need to remove the burden of health insurance from our businesses, because THAT will hurt our economy.

Medical insurance should be provided by the federal government to children, the elderly, the poor, and the disabled through a progressive income tax and a tax on the profit on drug companies and insurance companies that is not set aside for researching new treatments, etc.

The rich will have to take the bite in their paycheck.  And i'm sure they won't mind, because healthy, happy people are more likely to spend money on the things that make them rich than cash strapped, poor, unhealthy people.

You're trying to think of ways to pay those high costs. My plan is to reduce the costs through a competitive free market so that they become affordable. One area of health care treatment which still operates as a free market is vision correction surgery. Generally neither the government run programs nor the insurance companies will cover this procedure so people have to pay out of pocket. That makes them very cost conscious. They look for the best deals and that puts competitive pressure on providers. They know they have to keep their prices down to attract customers. The result is that the cost has fallen from $3000 per eye 20 years ago to sometimes less than $1000 today. Costs have fallen while other healthcare costs have gone through the ceiling. Another area that still works as a competitive free market is over the non-prescription drugs. Walk into your local drugstore and you find a vast array of products for common maladies. If you want a pain reliever you can pay $10 for a bottle of Tylenol or $1 for generic aspirin. Pick the product that meets your needs and fits your budget. That's a competitive free market. The products are safe effective and inexpensive. THat's what we need in the rest of the health care system.

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Snowguy do you believe in predestination? Because that's the philosophy you're expressing; that we have no more control over our destiny than a leaf blowing around in the wind. That's nonsense and you know it. I know far too many people who became well off through their own efforts. They did not all become rich, but most became comfortably well off.

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You've been listening to Opebo too long. But remember Opebo's vision of a great society is one in which the rich are slaughtered and their wealth redistributed  through "generous welfare benefits to those who choose not to work" (i.e. Opebo). That sounds a lot like the Bolshevik revolution and if that's what you want you're way off.

You must be logged in to read this quote.

[/quote]
Prior to 1913 the US was largely  a pure capitalist nation and it survived quite well.
How about if the rich get tired of paying those high taxes and just pack up and move to a tax friendly place like the Cayman islands. If you were a business man and the federal government took 70% of your income and then the state took part of what was left, how much incentive would you have for expanding your business?

[Ban my account ffs!]

There would be plenty of incentive, David.  Income tax is a percentage and perception of being rich is relative.  That business man can move to the Cayman Islands, but if his income comes from American soil, he still owes those income taxes.

And no, you do not become rich on your own any more than you receive an education on your own.  You most likely relied on public services and the labor of others to get rich.  I would say that you probably relied even more on public services than the average man to become rich.  You rely on those roads being unclogged and smooth to get your products around.  You relied on schools to educate you.. there are a million examples.  You need to look more at indirect relationships and factors that cause the end result and less formulating of opinions based almost purely on that end result.  That is not predestination.  It is the result of somebody who had the right idea at the right time and used the resources provided to him wisely in order to succeed.  Ultimately the choice is yours, but wealth does not happen by chance only to God fearing, hard working, red blooded Americans.  If that were true, I'd be a hardcore libertarian.

Also, I agree that certain aspects of medical coverage would benefit from less regulation.. such as over the counter pain meds or other treatments for everyday problems.  But we can't just deregulate cancer treatments and expect quality to go up.  Cancer is a matter of life and death and the treatment, which doesn't always work, is hardly something that can marketed like a bottle of Tylenol.

That's just common sense, David.

So, when more people are getting cancer or asthma or having heart attacks, and these are things that cannot easily be treated and must be thoroughly researched, tested, and proven, you cannot just leave it up to the private sector to maintain quality.  The first time somebody buys an inhaler and it doesn't help the symptoms, is the first time that the company will be sued and prices will go up.

And be honest David.  Is 1913 America really a place you want to live in?  A place where almost everybody but very few lived in general squalor with no consumer rights, very few labor rights, and no benefits while a very small number of people had massive amounts of wealth?

The country did not actually function all that well.  Poverty was rampant and homelessness and starvation or death was only one paycheck, bad harvest, or unaffordable doctor visit away.

There were no safety nets.  There was no social security.  Most didn't have any kind of medical insurance.  There was no unemployment benefit.  No disability benefit... if you got fired or you sawed your arm off while working, that was it.  Goodbye.  Hopefully you have a rich uncle to take care of you.

Is that the America you want to live in?  I'll forgive you for the extremely poor example, let alone the fact that 1913 America beyond all of this is completely incomparable to 2007 America.  People lived to be about 50 or 55.. so they worked right up until death.  The relatively few that lived longer (who were mostly likely more well to do anyway) were taken care of by family members.. because there were so few elderly people as a proportion of the population... not the 20% coming in the next 2 decades.

If you remove these safety nets, at first all will seem pretty nice.. but things will slowly start to decline before collapsing.  Parents will stop having their children vaccinated because they have more pressing needs (like feeding them) and diseases we haven't seen in decades will come back.  Hospitals will become overloaded or close because they cannot handle the amount of people that can't pay.  Overcrowding will result and quality will decline.  This will result in more unnecessary deaths due to cancer and heart failure or even emergencies where time is a factor and people are waiting until it's too late to get treatment.

And David... the vast majority of people that own businesses are not rich.  They work their asses off to make a decent wage and keep their business afloat.  I am a huge supporter of cutting taxes for small businesses.  My family built and ran a family resort for 8 years.  My parents dreamed of the day they could pay high taxes because they had an income of $250,000. 

Take a deeper look at the issues.  You're no idiot David.  But please don't ever try to convince me that 1913 America was better than 1955 America in any way, shape, or form.

[David S]

Many of the improvements in our quality of life are the result of technological improvements and not government social programs. You speak of 1955 as being better than 1913. Ok but medicare and medicaid did not exist in 1955 so the improvement was not due to them. BTW before medicare  doctors made house calls.

There are some things government does which are good and are within the scope of government's duties. Building roads is something state government should be involved in, in my opinion. Even the federal governments involvement in the interstate highway system was at least party justified as part of our defense system. Providing clean drinking water and sewers is another good one for local governments. But health care is not a constitutional function of the federal government. Once you take it out of the realm of a competitive free market you will face one of two things; either you will have skyrocketing prices as we have or you will have rationing, shortages, and wage and price control as countries with socialized medicine have.

And there is an even bigger disadvantage to government run social programs: As government grows bigger and more powerful, eventually you begin to lose freedom. On this very forum people have suggested that government health benefits should not be paid to smokers or even to the obese. As costs become more problematic things like that will become reality. Government will use its control over your health care to start running your life. And as people are made dependent on government programs they become less independent and they are forced to acquiesce.

What happened to the once proud people who said "Give me liberty or give me death"? Now it becomes give me a handout... please.

Snowguy at one time my philosophy was very much like yours. I thought of government as a benevolent big brother. But today I see big government as a danger. Today I would agree with George Washington's words:

"Government is not reason. It is not eloquence. It is a force, like fire: a dangerous servant and a terrible master".

Look at the recent  history of socialist governments that became big and powerful,  the former USSR, communist China, N Korea, Cuba. All of them promised to take care of the people. None of them did such a great job of that, but all of them did a great job of abolishing rights and creating tyranny.
And none of those countries provided the standard of living that our capitalist USA provides for us.

[Richard]

Name one insurance company that will insure you when you're 75 with failing health. 

None I hope, or they would go bankrupt.  Do you understand that insurance is not a right?  Do you furthermore understand that insurance is to hedge against uncertainty?  Do you realize that insurance is not some magical building where you get to put $200 a month into and claim $3,000 a month?  Do you comprehend that an event is not insurable if it is certain to happen because insurance is meant to smooth the curve of unexpected losses?

God.  People can be so bloody dumb.

[○∙◄☻¥tπ[╪AV┼cVê└]

So all of the economic conservatives think that private insurance companies shouldn't be forced to keep this girl alive. Fine. Let's have national health care.

[Tetro Kornbluth]

Name one insurance company that will insure you when you're 75 with failing health. 

None I hope, or they would go bankrupt.  Do you understand that insurance is not a right?  Do you furthermore understand that insurance is to hedge against uncertainty?  Do you realize that insurance is not some magical building where you get to put $200 a month into and claim $3,000 a month?  Do you comprehend that an event is not insurable if it is certain to happen because insurance is meant to smooth the curve of unexpected losses?

God.  People can be so bloody dumb.

But what you forget Richius is that normal people don't give a sh**t about whether an insurance company goes bankrupt or whether the world complies to your financial nicities or not.

What they do care about them, and it is why we are having this thread, is that this girl gets her nutrition and is allowed to live without tearing apart at the pockets at the unfortunate parents - and your whole "But the Insurance companies will lose money - and we all know that is the most important thing in the Universe EVER" arguement matters squat - it is not like this isn't a very unusual and completely uncontrollable case (we aren't talking a car accident here; this is no-one's fault - and its rarity means that profit would only slightly be dented - but then again, we all know how horrible that is). So you should except some social responibility here; except that concept seems about as alien to you as blacks being people.

[Хahar 🤔]

Big business is evil.

[7,052,770]

Big business is evil.

[Mr. Paleoconservative]

This story is truly disgraceful.  Big insurance in the United States has a big enough client pool to spread the risk [if the company is regulated to constrain their obscene profits] of cost to be incurred in cases such as the one troubling this little girl. 

The fact our state and federal governments seem to have no interest in solving these crises of the family and spirit such as this one should truly be frightening to anyone who believes in the American dream.

[opebo]

Name one insurance company that will insure you when you're 75 with failing health. 

None I hope, or they would go bankrupt.  Do you understand that insurance is not a right?  Do you furthermore understand that insurance is to hedge against uncertainty?  Do you realize that insurance is not some magical building where you get to put $200 a month into and claim $3,000 a month?  Do you comprehend that an event is not insurable if it is certain to happen because insurance is meant to smooth the curve of unexpected losses?

God.  People can be so bloody dumb.

So why would anyone buy insurance knowing that it will be terminated when they need it, Richious? 

[Ban my account ffs!]

Name one insurance company that will insure you when you're 75 with failing health. 

None I hope, or they would go bankrupt.  Do you understand that insurance is not a right?  Do you furthermore understand that insurance is to hedge against uncertainty?  Do you realize that insurance is not some magical building where you get to put $200 a month into and claim $3,000 a month?  Do you comprehend that an event is not insurable if it is certain to happen because insurance is meant to smooth the curve of unexpected losses?

God.  People can be so bloody dumb.

A hospital must treat a patient regardless of ability to pay for emergencies.

You are arguing a further reduction in health coverage for people which will ultimately put a larger strain on hospitals as unpaid accounts grow higher and higher.  This would result in the hospital increasing the price for other services to cover the gap resulting in higher insurance premiums and even more people going without insurance.  Either that, or the hospital would simply become over crowded and unable to treat everybody and quality would go down.

You claim that insurance is not a right, but life saving treatments during emergencies are.  Your stupid idea would send the medical system into a tailspin of skyrocketing costs or a never ending decline in quality of care.

This would also lead to a rise in emergency care because people, knowing they cannot afford preventative care, will wait until it's an emergency before seeking help.

This already happens all too often in the U.S.

Also, skyrocketing insurance costs hurt businesses because increasing premiums eat up profits.  Companies have responded by curtailing benefits or dropping them altogether.  This means that while peoples' wages have remained stagnant, health care and other unavoidable costs are eating up a larger share, meaning they have less money to spend buying products from these businesses.

Some large companies have responded by reducing prices on their goods and outsourcing their manufacturing and other departments to cheaper, 3rd world countries.

Richard:  You are a reactionary idiot who doesn't think things through.  It has become quite obvious that you have not a care int he world for the greater good or actually improving the economy, but instead seeking to raise yourself by pushing others down.  It is clear that you are a coward who cannot fathom caring for another person which explains your supposedly "logical" views on many issues... everybody else is stupid, illogical, and lazy.. and they should be punished for it so that "responsible" (read:  hateful and self-obsessed) people like you can make out like bandits.

[True Federalist (진정한 연방 주의자)]

I can see the insurer adding an additional deductible of $150 to $300  in this case equal to the difference between the cost of her being on this supplement and the cost of her eating regular food.

[Jake]

Fact number one: This girl needs this formula or she can't function.
Fact number two: Without insurance, her parents basically have to work around the clock to pay for it.

How is that acceptable in our society that three people's lives are wrecked because this girl is unable to be treated?

And Richard, I don't see why we should call it health insurance. I agree, health insurance should be a separate category only for as you said "uncertainty" (cancer, heart disease, etc.). However, health care should be provided by the government from birth so that the general health of our population improves, they live longer, happier, and more productive lives, and the crushing weight of health insurance masquerading as health care is lifted from our companies and businesses.

And for those blaming "big business", the SOC (which is the bad guy here) is funded by the City of New York.