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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@supersally:
[allergies.about.com]
“Steroids may be used as pills, such as prednisone, or as a topical therapy, such as using inhaled steroids (Flovent, for example) typically used for asthma, except that the medication is swallowed, not inhaled. This results in the delivery of the medication directly to the esophagus.“
Treatment involves the use of the topical steroid Flovent (Fluticasone) inhaler. The dosage used is 220 mgs. per puff taking 4 puffs twice daily for 6 weeks.
[www.mngastro.com]
“Unlike inhaled steroids where a spacer is used to help get the medication into the lungs, you are to spray the medication without a spacer. This allows for the medication to be delivered to the back of you throat and swallowed. This brings the medication in contact with your esophagus.“
@lalala1956:
I call BS on your BS. You know nothing about their situation.
We live in a SOCIETY. Every man for himself was left back in the caves. we built civilization to protect the weak. Why is there so much disdain for the unlucky?
Why is there generally so much anger that someone needs help because they can’t EAT ANYTHING?
“i’m kosher so pay for me, too. See it’s silly, yeah?” WHAT!? Why do you think that’s the same thing? How is that the same? HOW!?
So you’re allergic to milk, or are Kosher or whatever. this person can eat N O T H I N G! as in nothing. as in no food.
There seems to be 2 kinds of people that think this way:
1 – those who have suffered nothing (see first post who knows about life because his DAD – not him – had to work hard)
2 – those who have suffered, got a raw deal, and want everyone else to suffer right along with them.
So basically if her condition deteriorates to the point of needing the feeding tube, THEN the formula would be covered?? That is just asinine.
@Eyebrows McGee: cast iron skillets rule, if you need to know how to season and care, just ask. as emeril says, if you only could have one piece of cooking equipment, then make it a cast iron skillet.
@supersally: correct, that is why my wife had to stop nursing. so much for nursing always being healthier. the longer you can avoid exposing the baby to certain foods, the less chance of them being allergic to the food. don’t eat peanuts when pregnant if all possible may be good advice and certainly not when nursing. you have to wonder if any SIDS cases were due to nursing mothers eating food with peanuts in them. its certainly something most pediatricians are not aware of but pediatric allergists are.
And trollcreator, any allergists that prescribes steroids because the insurance company won’t reimburse for a formula, is committing malpractice with possible criminal charges. you don’t avoid food allergies by taking steroids — you stop eating the food that you are allergic too. steroids even in adults are suppose to be temporary for allergies, certainly for food allergies since those can be avoided. and once and for all, flovent won’t do jack against a food allergy. it is a topical for allergens in the nose and sinuses only. if you think you are going to know something about allergies that i don’t, think again.
@trollkiller: and this has what to do with food allergies?
@superchou: Would canada cover this? I’d be sort of surprised.
@humphrmi: What the hell do you buy that costs over $1200 a month?
@mconfoy: You act like I decided Flovent was an appropriate treatment. I didn’t guess at it, I looked it up and provided you with the links. Google is a wonderful thing, try using it sometime.
You know arguing on an “I feel it is true so it must be” is fine when you are talking politics, religion or any other “no right answers” topic. In this case we are talking about a medical condition. There ARE right answers, you just have to take the time to research and find them.
If you are the allergy expert on here, I think we would be better off reading tea leaves.
@mconfoy: and this has what to do with food allergies?
I donno, try reading. You may discover that it is an effective treatment.
I have to say, this thread was a complete trainwreck. I really enjoyed it.
@Amy Alkon: Well, that was ignorant and offensive.
First, it isnt your right to mock anyones religion as “silly”, just because you disagree with it. I know you, assuming this is really you, love to jump on any chance to criticize religion, faith, or anyone that doesnt think EXACTLY like you do, but this goes over the edge.
While Prof. Zuk made a valid point about the consumption of pork products leading to a reduction of the incidence of certain diseases, you completely ignore the studies, including one by NIH, that say that a Kosher (or other similiar) diet actually INCREASE life expectancy, and reduce the chances of contracting a number of illnesses. In fact, if you spent any time studying history that doesnt support your obnoxious point of few you would know that Jewish and Muslim dietary laws were put into place to keep those populations healthier, allowing them to grow.
I doubt I will get a response, since it is your habit to ignore anyone that disagrees with you.
@thesupreme1: That depends. I know my dermatologist once wrote on her prescription pad several supplements she wanted me to use, but I knew they were otc, even though she wrote this out for me as she would on a prescription pad. If this formula can be bought otc, then even if the dr recommends it, it doesn’t necessarily mean it’s a prescription. For example, I know two people who have been prescribed aspirin by their drs–they could (and have) gotten it from their pharmacist or they could buy it otc themselves.
I know someone with a premie baby and the premie formula is expensive–so I sympathize with the cost. However, I’m not sure this is medicine–it sounds like food to me.
I kinda have been in this situation, though mine was pretty different. My dog was diagnosed with an illness and I had to buy her prescription dog food–she could not eat regular dog food as it could kill her. The prescribed food was expensive but unfortunately, we can’t tax deduct health care costs for pets. I guess, if it’s any consolation, they might be able to deduct the cost of the formula in their taxes.
@Amy Alkon: 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.
The 75% was in one study, those results were not consistent in every trial. The whipworm suppresses the immune system, that is what causes the response in Crohn’s patients. The researchers used a sterile batch of whipworms to induce a controlled infection. An uncontrolled infection of whipworms can lead to bloody diarrhea, anemia and rectal prolapse.
Correlating the not eating of pork and the predisposition to Crohn’s is a very thin string. A genetic predisposition is more likely. [lib.bioinfo.pl]
A Lieutenant’s average earning is $122,000 in NYC. I know the price of living in NY is high but still 2 jobs to pay for formula seems a bit much.
I don’t suspect anyone here is expecting a child to subside on rice and pears (and really, do you know anyone who could live off that for months and years?).
Steroids and feeding tubes could cause permanent damage in children, whereas this formula crap doesn’t. In a case where there is a solution that is effective and non-harmful, isn’t that the solution that should be used?
@youbastid:
alot of times benefits cover some things when provided in certain locations…again the situation is unfortunate, but I doubt the company is weaseling out of anything…
Everyone is making a big deal about whether or not the insurance company should cover this formula. What we need to have is no insurance company so that the cost of medical treatment is more reasonable. Yes, there would still be people who end up sick and can’t pay for their treatment… but that currently happens to people who have insurance. If you put the money that you’ve been paying an insurance company into a savings account every month, at least you’d have some chance of being able to afford a surprise emergency treatment.
Also, feeding tubes are not the horrible thing that people are making them out to be. Yeah, it means a lot of extra work on the part of the parents, but if the dad could quit his second job, then he would have some free time to help out with that. I know a single mother who handled her baby being on a feeding tube until she was 6. The girl is now a healthy child of 12. The only social awkwardness is the same that all 12 year old girls experience. It’s difficult, but it can be survived, and it can help get your child well.
@samurailynn: You can’t see me but I am giving you a standing ovation.
The kid’s mom is a nurse so she should be able to handle any problems with a feeding tube.
@trollkiller:
I’m sorry are you in health care? Have you ever even seen a feeding tube? Have you ever seen one put into someone? I’m guessing not b.c it is a big deal especially to a child. Taking care of it is not the problem. It’s a problem for the person living with it. You dont just decide to stick a tube into your childs stomach b.c its cheaper than paying for formula. B.C samurailynn knew a 6 yr old that had one she thinks every person with one is the same. Do you know what a feeding tube looks like when its infected or how to explain to a child when they are school age what to say to other children when they ask why they cant eat or why they have a tube sticking out of their stomach. I dont care about the insurance. My insurance doesnt cover the formula. Between the extra supplements and formula I spend about 1500 a month. I do it b.c I’m the mother and my child needs it. You sacrifice everything in hopes and prayers of getting your child healthy. Our concern should be with these children who are suffering and all children who have chronic disorders.
@Naomi: I don’t get your logic – they didn’t move to a different area, they didn’t switch coverage. The insurance company was originally paying for it and then stopped. Again, the company never would have started paying for it at all if it was in plain writing that they didn’t have to. They obviously found a loophole that lets them weasel out of this. After all, they have some of the best loophole-finders in the world. They gotta be paying ‘em to do something.
@kkh: I have seen more feeding tubes than I would ever care to remember. I have seen them in infants all the way through to geriatric patients. Her mother is a nurse so I would hope that she would have the experience and expertise to minimize the chance of infection.
@youbastid: Or it could have been a mistake for the insurance to have paid in the first place.
Hmm, the child can eat rice and fruit–hate to say it but in some asian countries, that is what the kids eat. Sometimes just rice, no fruit. That being said, if I were her parent, I’d want to supplement her diet with the formula as well. The easiest solution would be to split the food bill in half, but I can see why the insurance doesn’t want to–it might open the doors for diabetics and others to get reimbursed for food or dietary products they purchase to manage their blood sugars etc . . .
As for the pork debate, I don’t eat pork–not for religious reasons but for ethical ones.
As for the formula itself, it looks like regular corn syrup mixed with oil (–and some liquid vitamins mixed in. Have they looked into making a homemade version of this formula for much cheaper?
As for the corn syrup, that can’t be healthy, but that’s what’s used for nausea meds so it makes sense that sugar will help keep food down. But honestly, you can buy corn syrup for a couple of bucks. I’d go that route myself–and then they could modify the recipe to work with her the best. I think that’s a great solution.
@trollkiller: It would be pretty tough to convince me that they were accidentally paying out $1200 a month for two years for procedures they don’t cover.
@youbastid: (procedures = treatments)
@youbastid: It could be that the claim was miscoded. They said the formula would be covered if used in a feeding tube. I am betting when the claim went in the person entering the information looked up Elecare in the book and found the code. Later they discovered that the Elecare was not being used in a manner that is covered.
@youbastid I’d believe a cock-up like that of just about any company. They shouldn’t happen, but they do.
@edogat: Sure, when it’s not costing them upwards of 15,000 a year. Look, health insurance companies are known for being tops at two things: counting beans and finding loopholes. This case certainly wouldn’t be the first time they excelled at both things, but it sure would be one of the first times they failed at both if it was truly an “accident.”
@superchou: here we go with advancing the liberal agenda…you should be ashamed to turn this very sad situation into a political debate. but in response to what you had to say:
let’s say you are a health conscious individual who exercises and watches what they eat, how would you like to pay the same for health insurance as your overweight cigarette smoking neighbor? is that fair? nope. is that better? nope…there is no perfect system. sorry.
All of you people suggesting that the feeding tube is actually an option are nuts. A feeding tube put in when the patient is capable of and willing to eat would be 100% elective, and not covered by the insurance. And therefore the food given to her via the elective tube would be elective and therefore NOT COVERED.
Unfortunately they are looking at the child as a huge liability to the profitability of the account.
@Tracy Ham and Eggs: Epic fail. She has every right to mock any religion she pleases, just as you have the right to mock her. First amendment and all….
Welcome to the world we now live in where its too much to ask a business to assume a risk in the face of billions in profits. If they dont make a fortune off of you then they will find a way to deny your coverage or jack the rates through the roof. It used to be businesses had some integrity, if they had 10 customers they were making a profit off they wouldn’t mind the 1 or 2 who cost them a little money, now they absolutely refuse.
@scampy:
My dad was working three jobs till I was about 8 years old. Then he went down to 2, then eventually one with long hours.
Though this whole situation is a little messed up, can you say this is really out of character for insurance companies?
@Red_Eye: I don’t know when that was, unless you are talking about necessities like food, in a small town. Did you just finish watching “It’s a Wonderful Life”?
@trollkiller: Re:daycare not allowing the bottle…
Many low cost daycares do not have food handling permits or refrigerators, which means yes they could give medication to a child who needed it, but no they could not store or serve formula.
And considering this family has an already tight budget, I’ll bet you anything she’s not at a ritzy place with a kitchen.
@scampy: You’re a sick prick
@ChrisC1234:
More over, it’s over the counter. I don’t think I’ve ever heard of any health insurance covering or subsidizing the cost of over the counter medicines or supplements.
I’m sure the insurance company would cover the feeding tube cost though, because that is not OTC, and done by hospitals and doctors.
@rhondalicious: So do all the kids get a cold lunch, or does the food handling permit apply because they would be mixing the formula? (not being smart, I have never seen a daycare without a kitchen)
Will the insurance company cover the feeding tube?
@ChrisC1234:
Yes, it is the insurance companies problem in you suddenly become allergic to air and need their help. That’s the whole basis of an insurance company… you know, so you have it incase unforscene medical problems arise… They are just choosing not to help because of how much money they will have to spend. This fully qualifies to aid!
More so than any of these posts, I wanted to comment on some of the other posts on the link to the actual article! Responses about goats milk and breast milk and oh it’s all so easy to fix or make your own solution. Some people are so ignorant! I’m sure no one thought of that… Thanks for telling us! I’m sure the family will get right on that and everything will be ok. I hope they all come down with a horrible disease that no one will help them with. Not only that, I hope that they wont be able to find any sympathy either and instead, just get ignorant responses about how its their own fault… exactly like how they are treating this poor family!
@swalve:
Yeah, Canada would cover this
I’m a nutritionist and am familiar with eosinophilic esophagitis (EE) so I thought I’d comment. Firstly, food allergy is the principle cause of EE. Kids that have EE due to a food allergy, are allergic to the protein in foods (such as milk, soy, nuts, eggs, etc…) Because their diets are usually limited to a handful of “safe foods” that don’t provide enough nutrition, they rely on nutritionally complete medical foods like Neocate or Elecare. Unlike vitamins or nutritional supplements, “Medical Foods” have a special FDA designation and are deemed “medically necessary” for people with certain conditions. Patients must have a recommendation from a healthcare professional to order from the local pharmacy or directly from the manufacturer.
People with EE have a build-up of white blood cells (eosinophils) in the esophagus which is a sign of inflammation. This inflammation is presented in many ways such as difficulty swallowing, vomiting, regurgitation, and abdominal or chest pain. By removing the causative agent, food proteins, and using Neocate or Elecare instead, the inflammation will be significantly reduced. Steroids may be effective at reducing the symptoms of EE but carry with them long term side effects, and once stopped, inflammation and symptoms recur most of the time.
Most insurers will cover Neocate or Elecare if a child has an expensive, invasive surgery to insert a feeding tube into his/her stomach. Many however, do not cover these medical foods if the child drinks it, which is a real shame.
Here is a link with more information on EE [www.actagainstallergy.com]
I am so disgusted with so much of what I have read in these comments. To those of you with a heart, thank you. I personally know this family and can tell you that no, this story is not bullsh*t as LALALA put it. I can not begin to tell you the number of times I’ve gone to visit my parents (who are their neighbors) and hear about the repeated trips to the ER for both children. It’s heart breaking to see and know what they are going through, and they are genuinley two of the nicest people I know that would go out of their way for anyone that needed them. Mike and Jessie have done everything they can possibly do to try and give Hannah a normal life. I can tell you she is a bubbley, imaginative, sweet 3 year old who loves to play outside, and why should any of the normalcy she has now be taken away with suggestions of a feeding tube. I hope to god that it doesn’t have to come to that for them. And as for comments on the salary of an NYP lieutenant and how that should be plenty to provide the added expense of the formula, take into account the cost of those multiple ER visits, the scrapings and testings that Hannah has to continually go through to check on the status of her disorder, the trips to seek specialist hoping to find someone closer to a cure for their little girl, the daycare they have to put their children in so that they can work to pay for all of this, and so on. This is also not figuring in that New York is not the cheapest state to live in, especially lower NY, and before suggesting that maybe they should move, there are requirements of where you must reside in order to work as an NYPD officer, in which he already has a hefty commute. If you’re clever enough to look up the salaries of NYC officers, why don’t you look up cost of living in Westchester County. I could go on and on about what a great family the Devane’s are. So before you have anything nasty to say, think about what you would do if you were awoken EVERY night by your child (niece/nephew/sister/brother….) projectile vomiting and crying for you. This disorder does not only affect this family financially, but emotionally and physically. Have a heart.