Hannah Devane is 3 years old and is allergic to food. Not certain specific foods. Hannah has a rare disorder that makes her allergic to every kind of food except a certain formula that her insurance company says is a “nutritional supplement.” Feeding Hannah costs $300 a week, but without the formula Hannah can’t eat enough to survive without doing permanent damage to her esophagus.
From Lower Hudson Online:
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.
Hannah’s father is now working 2 jobs to try to afford enough formula so that Hannah won’t end up on a feeding tube for the rest of her life. Boy, that’s sad.
Yorktown girl can eat only one thing: costly formula that insurance won’t cover [Lower Hudson Online via Fark]
(Photo:Stuart Bayer/The Journal News)
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@Naomi: I think not. The insurance company was paying for it first, then stopped. If the benefits guide said they weren’t supposed to pay for it, you bet your ass they wouldn’t have started. “Weasled out” is a good use of the term.
Wasn’t the whole point of health insurance to compensate for the fact that life is deeply, deeply unfair; that sometimes people can do everything “correctly”–get a good job, wait until marriage to have kids–and then their daughter’s food bill is $1,200 a month? For a medical condition?
In a legalistic sense, the insurance company may be technically “right”. But sometimes current law is out of sync with justice. Sometimes the price the free market sets is just too high.
@jenl1625:
Sugar-free Jello: $18 for a twenty-four pack on Amazon. You cannot be serious.
a g-tube is not the best choice for a 3 yr old. Any parent would pay for the formula then get a g-tube which opens up a whole bunch of problems . The risk for infection. The loss of oral motor skills with eating. Self image. I take care of people all day with g-tubes and its not something I want my child to have. My son has eosinophil esophagitis and a g-tube is not an option. He can only eat 5 foods and is on elecare, which by the way to all that are wondering smells like vanilla cake batter. My 19 month old loves it. I have gone to all different specialist and the only one that has made headway is a holistic Nurse practicioner that has found systemic yeast in my son that is associated with this disorder. After 1wk on the antifungals my son stopped vomiting. My son will be cured of this disorder…
@hillsrovey: I think FSAs can be used on OTC drugs.
@scampy: No, life isn’t fair. It’s particularly not fair to a little girl with a disease thats fairly rare and expensive to treat, and both of her parents work.
You’re mother staying home full-time is not the same as her mother working part-time, and her father working two jobs.
@glass:
@CurbRunner: Worse than that, the police department is “self-insured.” Which I think means the Attorney General’s Office handles this.
@no.no.notorious:
@Splendor: Well, the Elecare product is made by one company (Abbott) and is more than likely pretty expensive to make to begin with.
@ChrisC1234:
@trollkiller: You missed the difference. You’re friend can buy food “off the rack” and eat enough to live. This girl can currently can eat rice and pears besides the formula, which dones’t provide enough nutrition to sustain a growing child. These cases while similar, are not of the same species.
@trollkiller: Steroids seems to be used after a determination of the allergins has been compleated.
@thesupreme1:
@Jim (The Canuck One): Actually, according to the State of California, Elecare would under certain circumstances be covered. Like the circumstances this girl is in. And if you’re curious, here’s the NDC for it: 70074-0546-66.
[abbottnutrition.com]
@lalala1956: Yes, you’re right. Bullshit indeed. After all, it only costs 11.8% of her father’s monthly pretax income from his primary job to pay for it. That was done with a little trick I like to call “math.”
Because ER visits multiple times a month caused by her eating the food she is literally deathly allergic to is much cheaper than preventative treatment. And as “supplements” go, it’s not like the doctor prescribed herbs from the healthfood store, but rather a product from a well-known and established firm.
If her condition gets worse, she dies. Therefore she would no longer be a burden to them.
Finally, this post seems to have brought out the most asinine comments I’ve ever read at The Consumerist. So much of what was said, or not, is really very easy to check.
too bad the family just doesn’t up and immigrate to Canada – a country whose Universal Health Coverage would cover this. I hate this country’s health care system… since when is Health Care a privilege instead of a right as it should be
@josh42042: ha
@trollkiller: Taking steroids over the long term — and for a child that young, we’re talking the VERY long term — is devastating to the body and can cause kidney shutdown, which will require far MORE expense in dialysis and/or kidney transplants.
My sister developed an extremely rare form of arthritis in her teens. Steroids are one of the most effective treatments for it, but she would be dead before 40 if that was used as the primary treatment starting as a teenager, and would have come with spectacularly disastrous compounding health risks for the intervening years. To prevent her from becoming far MORE ill and costing far MORE money in the long run, and dying very young, she takes a much more expensive, but far less damaging, regime of drugs. (Where the major long-term side effect is apparently MS and which aren’t meant to be taken by people younger than 50 or for more than 20 years or so, but it’s still the less-damaging option.)
@superchou: This would NOT be covered by medicare (Canada’s universal healthcare system). That only covers medical treatment, hospital expenses, that sort of thing. Medication and anything else isn’t covered (unless you’re in a hospital). Many Canadians have health insurance to cover expenses like prescriptions.
On the other hand, if the nutritional supplement is prescription-only, chances are it would cost a fraction the price in Canada. The family may want to look into importing it. There are many pharmacies that will sell Canadian products to Americans.
I was thinking the other day what it would be like if auto insurance was like health insurance. You wouldn’t be allowed to change the oil unless you went to a special approved place, and it would cost $300. Your premiums would be $800 a month, and have a damage cap of only half of what you’d end up incurring if you ever actually damaged your car. And you’d randomly be denied or dropped if they found anything wrong with your car before a claim, such as tire pressure being 1 psi too low, or an unexplained scratch on the bumper.
And alternative transportation would be deemed experimental and many types of it illegal since it has not been decided if riding a bicycle is not damaging to the roadways.
I was thinking about the best way to actually “fix” the health care problem… and the only way really is to bring down the cost of health care so that you don’t NEED insurance for anything other than massively critical emergencies.
@wesmills: And why can’t the child take the formula to daycare? Is it because the daycare does not allow bottle babies? Does the daycare also not allow other medicine the children may need?
The further I read the stinkier it gets.
@trollkiller: You should just change your name to “troll” and leave it at that, dickhead.
What if that shithead looking kid in the picture contracted should terrible, affliction? I’d bet dollars to donuts that you’d change your tune so fucking fast.
FUCK YOU, YOU INSURANCE COMPANY SHILL.
That’s right, I know exactly who you are, and I hope you and all your friends at Humana eat shit and die.
@Eyebrows McGee: Taking steroids over the long term — and for a child that young, we’re talking the VERY long term — is devastating to the body and can cause kidney shutdown, which will require far MORE expense in dialysis and/or kidney transplants.
So what do you propose? If you think steroids will be bad for the long term just think of how drinking this supplement will be in the long term.
Case of 6 Elecare formula is $201
[www.nextag.com]
Each can makes 64 fl. oz. of formula. For reference 2 liters is 67.6 fl. oz.
So if they are spending $300 a week I figure they are using about 1 can a day to maintain her at 40 lbs.
Now fast forward a few years. Now she is an adult weighing a modest 120 lbs. She would have to drink approx. 1 1/2 gallons of formula a day to sustain her.
Steroids on the other hand, if used properly, can be a safe, effective treatment. Yes steroids have some nasty side effects but those can be minimized with due diligence and care. Prednisone can be used or a better option may be Flovent.
Flovent is normally sprayed up the nose but it can be sprayed down the throat and used as a topical steroid. This would keep the dose down and keep the nasty side effects to a minimum.
The point is the kid can not live on formula forever. If it is being used as a short term treatment while they test for other food the kid is not allergic to, that is fine. If this is being used so the parents don’t have to break the kid off the bottle or they don’t want to deal with the crankiness that steroids brings to party, too bad.
There is a step between starving the kid and putting in a feeding tube, they just don’t want to take it.
@matt1978: That would be funny if not so stupid. Go read my history you ass. I am the one that thinks there should be NO insurance.
You bleeding heart liberal dink. You expect insurance companies or any company to have compassion. Boo Hoo. It is not going to happen. Companies set policy and guidelines to protect their bottom line, not to appease you or your hippy ideals. “Everything should be free, at least to me.” See folks pot DOES kill brain cells.
Pull your head out of your ass before you sufficate, because you know that won’t be covered by your insurance.
@goodkitty: The difference between auto insurance and health insurance is that if you can’t afford to change your oil and your car breaks down as a result, your auto insurance will not pick up the bill. If you cannot afford to get preventative care, and you find your cancer at a stage III or IV, the insurance company (and, indirectly, all of its policyholders) will be paying for very expensive chemo. Full insurance (including preventative care) is less expensive in the long run.
@goodkitty: Don’t forget unlike a body shop, private pay customers pay more than insurance customers at the doctor’s office, lab, hospital ect.
Health insurance has to be the most convoluted industy ever.
@goodkitty: Clarification: I was talking about the total bill to the insurance company, not the co-pay.
My youngest son has this condition, and the insurance company not only covered the formula, they did so 100%. They figured if you have this condition, you have enough to deal with(how bleeding heart). We’re trying to narrow down what is causing the reaction, and Flovent.
If you don’t like how these companies treat you, tell you HR and get others to as well. Enough people complaining will get them dropped next open enrollment(in theory). Is the NYPD not in a union?
The way this story is written neglects the fact that, unfortunately, eating $300 a week formula isn’t medically necessary – the child could be fed on a feeding tube which would be covered by their insurance. That sucks, but so does having a rare disease.
The insurance company probably said this to the parents who want to play doctor and insist what they want to give their little precious is what she needs – there’s a big difference there. Yeah, her quality of life would be better if she had the formula, but yeah, her insurance doesn’t cover it. Yeah, they aren’t being compassionate, but they don’t have to.
@trollkiller: Have you ever been on steroids? I was on pred for a short while and the side effects were ridiculous. Besides, they aren’t exactly a cure as it’s not like she can start eating all the food she wants. She’d still have to watch her diet and be on them for as long as she has this disorder. Oh, and Google doesn’t make you an MD. If that answer was as simple as you suggest, I don’t think the family would be in this position right now and all the healthcare professionals they’ve consulted with should be fired for incompetence. Lastly, steroids aren’t the only treatment methods out there although they’re probably the least experimental and cheapest.
Also, did like everyone miss the part in the article where it’s mentioned that the younger sister is starting to display the same symptoms? What’s now $1200/month for one small kid could easily double (and more) as both of them grow and inevitably end up needing more food. No matter how much the father makes now, something needs to be done about it now.
I wish them the best of luck. I’ve wasted a countless amount of time dealing with my insurance company’s assholery over Xolair coverage and wondering if my policy would be retroactively cancelled by some asshole being paid to look for even the most trivial of mistakes. fuckers.
Insurance is to cover things that are unexpected and if an insurance company wants the premium then it should pay up when people make a claim. People should be allowed to choose their care. I have been paying for health insurance for my whole life and never made a claim. Now I pay for my family and god willing I will never have to make a claim for them. Maybe I should put a clause in my policy that negatively affects them. Like I get a new car if I go 5 years without a claim. If you wan the premium then be prepared to pay the claim. Its called risk and that is the business of an insurance company. Now they have taken all of my premiums and paid every politician up and down either side of the aisle to be able to get away with this crap. A feeding tube is not a like comparison to formula. I say tough tiddies to them. Even if this story is total nonsense everyone digg it and post it and send it out to everyone they know and we can finally get these poli bribing insurance company losers. The only way to even the playing field is to mass as one and force our will. What is good for Humana is not good for you. Remember that a “claims specialist” is your enemy. Treat them like that from the first second you have to deal with them and your experience will be better. I hope Trolkiiler loses his job and gets a bacterial infection when he is forced to eat shit. If he has a problem with that email me.
@crazylady: Yes I am on pred as we speak approx. 3 years now. Working to get off of them but my adrenal gland may be shot. We will find out in another month or so, I am down to 10mg per day. So how much did you eat and how much house work did you get done?
Pred or other steroids are not cures but if the choice is eating or not eating, hand me the pred.
Google does not make me an MD but it does keep the MDs honest. I have a philosophy, the doctor has hundreds of patients, I have only one. Without the internet and my own dedication to researching my disease and treatments, I would be dead now.
The formula is ok for now but what happens when the kids grow up. Do you think you could choke down 1 1/2 gallons of formula a day?
@Greg L: I guess the best thing to do here is a bit of cheating. Charge the insurance company for a feeding tube, but just forget to put it in.
@swalve: @ChrisC1234: Insurance covered soy formula for my son when he was allergic to milk.
@trollkiller: what steroids are you going to give a child for this? are you crazy? no doctor would do that because the insurance company won’t pay.
@trollkiller: flovent? you have no clue what you are talking about. a steroid nasal spray? those steroids are not even absorbed into the body. the best choice is the formula. talk to an allergist sometime instead of making this stuff up. i have lived this myself.
@trollkiller: about 70% of kids outgrow food allergies by age 11. Most likely it won’t even be necessary by then. give up, you showed your nonsense once in for all on giving the kid steroids as a toddler.
and by the way people, it also depends on the state you live in. in massachusetts, they would be required to cover this. just as they are required to provided a nurse to visit your home once at no charge for the birth of each child.
Woo-hoo! Lots of comments, clearly Meg has hit a nerve.
Just curious, and I don’t mean this in any particular sway of the argument here: since I keep Kosher, and my grocery bill is WAY over $1200 a month, can someone please pay my grocery bill for me? I would ask my insurance company but clearly from this thread that won’t work.
No, keeping Kosher isn’t a choice.
Then get the Dr to prescribe a feeding tube. Insurance will pay for that then she can eat. There are alternatives.
@humphrmi: You are a mite late if you’re trying to troll up this thread.
this was the type of ridiculous crap thats going on nowadays. i only saw 10 minutes of the movie Sicko, but it was enough to get the idea. all the insurance companies do is dish out supposed great coverage, and then when you try to make a claim, they do everything in their power to find loopholes or reword things so that you arent covered. bastards…
After reading about this it seems that its only identified in adults. I could see the insurance companies claiming that the doctors prescribed “supplement” isn’t standard treatment for the illness but only because it isn’t common in children.
Ultimately I can see both sides of the story, but what gets me is that if the child doesn’t get the supplement it will probably die or be hospitalized. The hospitalization bill will probably be fairly high, but I guess the insurance co. is counting on that cost still being lower than feeding the child until it can have normal treatments that adults have for this.
@trollkiller: You can’t do that, it’s fraud. If it was proven that the Doc purposely billed for the G-Tube knowing it was never put in he faces jail time, fines, and permanent loss of liscense.
@humphrmi
Yes, keeping Kosher is a choice. nd it’s not related to your health, so in no way does it have anything to do with this situation.
@trollkiller
I can’t imagine a Dr. prescriping steroids to a child that young unless there was no other option eg cancer. And a lot of cancer kids have terrible side effects related to their steroids, even psychosis. It’s probably not an option unless she’s dying, which with the formula, she not. (And yes, I was on them, too, also for cancer. Steroid treatment for adults/=steroid treatment for toddlers).
And I’m betting that if the feeding tube were inserted without her esophagus being shot all to hell it would be deemed “not medically necessary” and would be denied, along with the subsequent formula.
Feeding tubes are not options people, feeding tubes are last resorts.
@swalve: Yes, it does. Food supplements are common contract insurance language in just about every policy. I’m quite certain that a Union sponsored plan such as his would not be a bare bones Wal-Mart policy.
@Mr_Human: That’s an interesting comment. Could you please expand on it?
@RocktheDebit: I’m assuming your point (about the cost of sugar-free jello) was that the fact that sugar-free foods are so much cheaper than this supplement that they are two different things. But not really – sugar-free jello is cheap, sure, but it’s one little thing. If you have to eat a sugar-free diet, it costs more than a “normal” diet (see various articles about how the food stamp program may be causing obesity, because cheap foods tend to be starchy and high-fat). And if you need to eat a no-meat, no-wheat, no-sugar diet, then you have to do like a former co-worker of mine and buy different things from different specialty shops around the city. It was expensive and time-consuming. Should her insurance company have paid for some of it just because it was expensive and was related to a medical condition (an allergy)?
It’s the same situation, taken to extremes. The child unfortunately can basically eat only one food (the pears and rice not being enough). That one food is very expensive.
That stinks, but it also stank that my insurance company wouldn’t pay for my $115-per-month pills to increase my iron levels (which were borderline anemic) because “no vitamins are on our drug list”. The fact that they were expensive, prescription vitamins was irrelevant; the fact that this child eats expensive, prescription food doesn’t change the fact that it’s FOOD, not a drug or a treatment.
@lalala1956: Do you know how much it costs to live in NYC? How much regular foods cost, rent, utilities, public transportation or insurance for a car?
It’s expensive. People get paid more there, yes, but you pay a lot more to live there.
No comment on the insurance covering it or not. I just don’t know if they should or not. Just pointing out his salary isn’t THAT fantastic.
Formula which costs $1,200 a month? That shit had better be made from gold and silver.
P.S. Seriously. I’d like the Consumerist to do an expose on which company is making $1200-a-month formula. There is no room for profiteering when it comes to life-sustaining substances.
@mconfoy: Flovent usage [www.gicare.com]
[www.apfed.org]
Your son was allergenic to milk, one allergen. At what age did the insurance stop covering the soy?
@mconfoy: Ok now I am thinking you have been up too long, you are no longer making sense. You can place a toddler on steroids, it is done all the time if it is the appropriate treatment. Get some sleep.
@Apoch: You can’t do that, it’s fraud. If it was proven that the Doc purposely billed for the G-Tube knowing it was never put in he faces jail time, fines, and permanent loss of license.
I was being a bit snarky, I did not think it would be taken seriously.
@supersally: Steroids vs. feeding tube, I think I would go the steroid route especially if I could use a topical like the Flovent.
What does it really mean to have health insurance anymore? If I shell out $400 for something, which I do, then I expect my health problems to be covered, even if they are a bit on the weird side.
Gotta love the health care debate in this country. First, it was that those lazy welfare people who don’t get health insurance deserve what they get. Now, it’s “how dare you person with insurance have unusual problem.”
Single Payer. Now.
since I keep Kosher, and my grocery bill is WAY over $1200 a month, can someone please pay my grocery bill for me? I would ask my insurance company but clearly from this thread that won’t work.
No, keeping Kosher isn’t a choice.
Uh, the belief, without evidence, in god, is dumb, but it’s not an actual medical condition. The same goes for all the practices that ensue. FYI, behavioral ecologist Marlene Zuk, in a talk at the Human Behavior and Evolution Society Conference at Penn a few years back, discussed how Jews and Muslims, who eschew pork, are more predisposed to get Crohn’s. Researcher JV Weinstock found that a solution of pig whipworm in Gatorade stimulates the immune system of Crohn’s patients, leading to a remission of the disease in 75 percent of those tested.
So…silly, evidence-free religious beliefs can end up costing the rest of us in raised insurance prices.
I agree she should be covered, this is like not covering tube-feeding for a comatose patient.
But, I don’t see anything in the article about whether she was breastfed prior to switching to formula, but since it says the problem started when she started formula, rather than at birth, I expect she was. Why can’t the mom breastfeed her again? She has a new 6-month old daughter and so should be lactating, if needed she could switch the 6-month old to formula (or try donated human milk for one of the girls).
@trollkiller
The Flovent is not used topically to treat the condition. It’s swallowed. Besides, like I said earlier, despite what you may have experienced first hand, steroids for toddlers are a much, much, different animal than what you would’ve been on. The damage can be extensive. Also, like I said, I doubt the feeding tube would be a covered option unless she could get nourishment no other way. If she can and will still swallow, the feeding tube would be elective, and not covered.
@cy guy
The condition occurs later because it’s age related in it’s onset. And remember, when breast feeding, what you eat is what your baby eats. So if your child is allergic to something and you eat it, then there is a reaction to your breast milk because you consumed the offending food. I’ve known of moms who have babies with milk allergies who have to go dairy free from the duration of the breastfeeding. So essentially this mom would have to eat pears, rice and fancy formula if she wanted to breastfeed her allergic toddler, which just seems silly.
@jenl1625: “but it also stank that my insurance company wouldn’t pay for my $115-per-month pills to increase my iron levels (which were borderline anemic)”
If you’re still having the problem, have you tried cooking in cast iron? You get “contamination iron” in the food from the iron cookware (it’s okay, it just sounds scary, but it’s safe) and for many people, especially if they’re just borderline, it fixes the problem without any fuss. (And you don’t have to cook EVERYTHING in it, just a couple times a week.)