Insurance Company Denies Coverage For 3-Year-Old's Only Source Of Nutrition

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)

Comments

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  1. scampy says:

    Oh My. The Dad has to work 2 jobs. My dad worked 2 jobs until I got out of high school just so my Mom could stay home and raise me and my brother. sometimes you have to sacrifice. Life isnt always fair

  2. FijianTribe says:

    Now that is seriously screwed up….

  3. no.no.notorious says:

    it’s $300 a week because theirs probably an assumption that it’s going to be paid for through insurance

  4. glass says:

    thats disgusting. seriously. an NYC police lieutenant has to get a second job because the insurance company wants to weasel out of their obligations? god bless america.

  5. Splendor says:

    Yeah. Who’s worse? The company charging $300 a week for formula, or the company who refuses to pay it?

  6. glass says:

    @no.no.notorious:

    this is absolutely true. however, it doesnt effect the outcome of the situation :/

  7. hitmewithataser says:

    @scampy:

    Are you serious? I hope that you receive a debilitating disease that requires a treatment your insurance won’t cover. Have fun working extra jobs when you have a rare immune system disorder.

  8. wring says:

    @scampy: wow. are you serious?

  9. ChrisC1234 says:

    As much as I feel for this family, I’ve gotta say that I think I side with the insurance company on this one. If I suddenly became allergic to the air in my home, would it be the insurance company’s obligation to pay for a place for me to live? The insurance company is under as much obligation to buy this formula as they are to feed the rest of the family. I know someone who is allergic to yeast and soy. It is hard (and expensive) for her to eat without getting sick. Should the insurance company pay to feed her too?

    Now, if the insurance company had anyone working for it with a heart, they should come up with some sort of co-pay agreement for this formula.

  10. ClayS says:

    The health insurance policy’s Outline of Coverage needs to examined to determine if the insurance company should pay for the formula.

    It would be nice if the formula was covered, but we don’t really know if the insurance company is obligated to pay.

  11. southerngirl81 says:

    It’s not an insurance company making the decision – read the article.

    “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.”

    It’s self-insured, which means the Superior Officers Council pays into the fund from which claims are paid. They also select what coverage they will provide. In this case, the dad’s employer has chosen not to cover the formula… not an insurance company.

  12. swalve says:

    Insurance doesn’t cover food.

  13. thesupreme1 says:

    “A doctor-prescribed formula”

    So does that count as a prescription?

  14. Chris Walters says:

    @swalve: If you can’t eat a variety of foods like a normal human, and are stuck with only one (expensive) choice or death, then it should qualify as a medical treatment. Or should insurers also refuse to cover feeding tubes and glucose drips?

  15. trollkiller says:

    Steroids are a common and EFFECTIVE treatment. Steroids $30 a month, special formula $1200 a month. Not a real tough call here.

  16. bohemian says:

    Since it sounds like a doctor has to prescribe the food replacement it would probably fall under prescriptions or other treatments. It also isn’t a food supplement, it is the person’s only source of nutrition.

    I think it is another insurance company paper pusher who just rejected it on the grounds that they didn’t fully understand how or why it was being used and rejected it.

    They wouldn’t (one would hope) deny food via a feeding tube for someone in the hospital if they needed it. So really the difference is the method of delivery.

  17. Benny Gesserit says:

    @thesupreme1: Only if the product appears on a drug list. (And, hopefully, on the one the family’s group coverage uses.)

    Unfortunately, I doubt the formula has a DIN (drug identification number) so they’ll have an up-hill battle.

    I wonder if they could plead it’s long term cost would be less than those associated with the feeding tube – procedures, re-fits, fighting the inevitable infections, etc etc?

  18. lockdog says:

    Off topic, I know, but did anyone read down to this in the linked article There is no way of knowing how long Hannah’s condition will persist, Wershil said. The disease was rarely seen before 1995 but now about one child in 10,000 has it. The symptoms usually appear in children 7 or older. Many have histories of other allergies. 1 in 10,000…WTF??

  19. Hoss says:

    At least they should take the tax deduction — this is a nutritional supplement for a prescribed purpose

  20. youbastid says:

    @ChrisC1234: Um, no. Their insurance covers every member in their family. The daughter was born with a MEDICAL CONDITION that doesn’t allow her to eat regular food. The special food is medically prescribed, and as far as I can tell, only available by prescription. No one’s asking the insurance company to pay for this girl’s Whole Foods bill.

    @lockdog: Going from virtually 0 to 1 in 10,000 in only 12 years? Sounds like someone’s been dumping in the water supply!

  21. smarty says:

    It looks like Elecare can be bought OTC:
    [www.amazon.com]
    [www.drugstore.com]

    But that doesn’t mean insurance shouldn’t cover it. The terms of their insurance should be looked at closely by a lawyer, and she should spread the publicity about it. Insurance is the most corrupt industry. [www.bloomberg.com]
    That link shows how intertwined state insurance officials and insurance companies are. Hopefully the Devane family doesn’t experience NY state insurance corruption.

    The insurance company better look at paying for the formula now instead of paying for her feeding tube in the future. I’m betting Elecare is cheaper than a feeding tube.

  22. Me - now with more humidity says:

    scampy’s a troll… ignore it and hope it’ll go away.

    re:the insurance company, cut anyone who has touched this file off of their food until they come to their senses. Bastidges.

  23. cabedrgn says:

    While the policy maybe there, the logic is flawed. If insurance balks at the $1,200/mo cost of the formula and refuses to pay for it they may well end up paying more in the long run should she have to be fed by tube.

    However, working in the industry I’ve learned many things. I’ve seen small to midsize insurance companies go under because they had too many chronic diseases patients. It’s never good when you have MS, HEP, cancer, etc and are dropped because your insurance company ran out of money and no longer in business.

    I’ve also seen small biotechs taken down because all the money they’ve paid in R&D and patent licenses (for portions of a developing drug) end up being worthless after another company (a certain middle eastern generics company comes to mind) stole the formula and managed to patent first or even an ultimate denial by the FDA.

    Despite what many people say, no one person has a clear good answer for any of this. Things need to change but until everyone starts working together for a clear goal, nothing will.

    *sigh*

  24. Me - now with more humidity says:

    trollkiller: when did you get your medical degree and have time to review the child’s complete medical file?

  25. lalala1956 says:

    I’m calling complete bullsh*t on this family’s sob story about needing to work a second job and all that stuff.

    Just looking at the New York police officer’s pay scale page, the average NY police lieutenant makes $122,000 a year.

    “1 in 20 uniformed members of the NYPD are Lieutenants. A Lieutenant’s average earning is $122,000*”

    http://www.nypd2.org/html/recruit/salary.html

    $300 a week from that sort of salary would hardly necessitate a second job and plus the officer could just as easily work more overtime if needed (which I doubt). If the family is dishonest about this part of their story, it’s hard to believe the rest of their story.

  26. youbastid says:

    @smarty: Problem solved! They’ll save 15% if they order it on subscription from Amazon, which they’re surely gonna need. ;)

  27. Youthier says:

    How awful! My concern is a police officer working two jobs can’t be the best person to have on the job, am I right?

    I think the food tube is going to be more pricey and require more medical supervision than the formula.

  28. trollkiller says:

    @Me: Try doing a Google search on the disease. I don’t need a medical degree to be able to read.

    Something else that has been missed, the child can also eat rice and pears. Ok not real fun food but it proves the expensive formula is NOT the only thing she can eat.

  29. lalala1956 says:

    Also I would add that it’s a supplement the doctor is prescribing and not a drug. Supplements have not been rigorously tested like drugs via the clinical trial process. I wouldn’t be covering supplements either if I was an insurer.

    You also have to consider that it’s in the insurer’s best interest to keep this girl healthy. Every ER visist with the girl or outpatient surgery is likely costing them thousands. Ask yourself why the insurer would want to see her condition get worse in this case. This isn’t an end stage metastatic cancer patient and any health failings with her would be long term huge expensive for the insurer.

  30. lalala1956 says:

    Trollkiller’s point was my next point as well. Nice insight.

  31. SisterHavana says:

    This is sad. There’s a similar case in Illinois:

    [www.weau.com]

  32. StevieD says:

    Where does the insurance company draw the line? There are rules. The rules are in place to protect all concerned.

    If little Hannah didn’t have this terrible disease, wouldn’t mommy and daddy be paying for her normal diet? Whether the insurance company should or should not pay for Hannah’s food bill, is it not safe to say that Hannah’s mommy and daddy should at least pay for a part of her normal food bill?

    And if this food product is truly medically critical to keep little Hannah alive, there are legal and ethical means to provide Hannah with the food with the insurance company footing the bill. Remember there are a whole bunch of elderly folks are living off of Ensure and similar products, with insurance companies, medicad etc picking up the tab.

    What this entire problem sounds like is the Doc hasn’t figured out the proper insurance code to classify Hannah’s food, and the insurance company is volunteering the information.

  33. CurbRunner says:

    Nothing about these companies surprises me anymore.

    The callousness of insurance companies is becoming so prevalent that it is simply blending into the texture of moral decay and is no more outstanding than ambient background noise.

  34. trollkiller says:

    @CurbRunner: Insurance is NOT charity.

  35. kkh says:

    To trollkiller
    You obviously have no idea about what longterm use of steroids can do to your body. It’s a child we are talking about. I am a RN and a mother of a 19 month old with eosinophil esophagitis. Unless you have been in this situation and have a sick child, You have no right putting your uneducated two cents in. How dare you think its that cut and dry. Are you even a parent? Do you know what it’s like to watch your child suffer and vomit on a daily basis? This formula gives the essential vitamins and minerials the child cannot get b/c they CANT EAT FOOD. Taking steriods does not allow them to eat food it just controls the vomiting and swelling inside the childs body. Why dont you do some research before you open your mouth next time..

  36. Falconfire says:

    @trollkiller: your right, charity gives you things for free… people pay to get anally raped by insurance companies whop dont fulfill their agreement.

  37. overbysara says:

    it’s business. :shrug:
    I wish we could be insurance-free.

  38. jenl1625 says:

    @no.no.notorious: Why would anyone assume that an insurance company would pay for a nutritional supplement? More likely, it costs that much because of the assumption that a person will replace or add one meal a day with the supplement, but they have to feed it to her for every meal.

    I feel bad for this family, but it sounds like this is food, not medicine. Sure, she can only eat this one food because of a medical condition. But does your insurance company pay for sugar-free foods to control your diabetes? Does health insurance pay for the gelatin your doctor recommends while you recover from a flu?

  39. csdiego says:

    I knew a kid who had a condition a lot like this. He was allergic to practically everything (red meat. wheat. eggs. soy. dairy. citrus. nuts. chocolate. fish. and probably some others I forget.) except for root vegetables, some fruits, and rice. The only way he could digest protein was if it was broken down into the component amino acids, which he could only get through an expensive formula. After a few years they found that he could tolerate chicken, sometimes, and by age five he could eat wheat, sometimes. He still had and has terrible digestive problems, that could be set off by anything and everything.

    So, basically, this was a kid who couldn’t get protein except through a prescription product. Sounds a lot like a feeding tube or Ensure to me.

  40. sonichghog says:

    They should take the average food cost for a child and subtract that from the insurance coverage. So if a normal child would buy $100 worth of food a week, the insurance should pay what would be the $200 a week difference.

  41. josh42042 says:

    great, now i hate scampy more than the insurance companies.

  42. GinaLouise says:

    @overbysara: So how is that going to work? Do you suggest that we all have enough cash buried in the backyard for each family member who needs surgery or emergency care?

  43. rbcat says:

    @trollkiller: Rice and pears do not provide enough nutritional or calories to sustain the girl (especially a growing toddler). From TFA: “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.”

    Looking at the nutrition page for EleCare, this stuff goes way beyond just some vitamins: “55% Corn syrup solids, 8.9% high-oleic safflower oil, 7.5% fractionated coconut oil (medium-chain triglycerides), 6.4% soy oil; Less than 2% of: L-glutamine, L-asparagine monohydrate, L-leucine, DATEM (an emulsifier), L-lysine acetate, calcium phosphate tribasic,” and that’s just the first line of four (on a wide screen monitor).

  44. Klink says:

    @scampy: Yeah, but was your dad promised that he wouldn’t have to and then it turns out it was a lie? No. Quit trolling.

  45. humphrmi says:

    Without jumping on either side of this debate, my suggestion to the family (seriously): talk to the insurance company or the provider. If the provider is charging a premium, it’s probably because they figure that if insurance *does* come into play, they will be forced to take a small percentage of their asking price for the formula. On one hand, sometimes you can get the insurance company to force them to provide the uninsured portion at “negotiated rates” – meaning the same rate the insurance company would pay if they *did* cover it. On the other hand, if you don’t want to deal with the insurance company anymore, talk to the provider, and beg your case that you’re uninsured and need a better deal. Usually they will relent.

    I know, it’s not a silver bullet, but it’s something to start with anyway.

  46. Mr_Human says:

    It’s funny, but it’s not the story that makes me want to see socialized medicine introduced in this country; it’s the comments.

  47. nardo218 says:

    @youbastid: Peanut allergy has been rising at precipitous rates, too. No one really knows why (afaik) but clearly something’s going on.

  48. lalala1956 says:

    This is not an enzyme replacement therapy case like for children with certain rare metabolic diseases such as phenylketonuria. Insurers do cover the cost of those $50,000 to $90,000 a year drugs.

  49. hills says:

    It’s standard insurance coverage to cover only nutritional aid given via feeding tube – I know because I have one, and my SAME protein drinks were not covered before my feeding tube. Those of us with rare diseases are often automatically denied claims, and must appeal. Honestly, this little girl’s best best is a g-tube (it’s not that bad, and I have a feeling that the stuff she drinks tastes nasty, so it’s probably inevitable in the long run anyway….).
    Also, this is not a tax deductible expense because it is over the counter (doesn’t matter if it’s medically necessary).

  50. Naomi says:

    @glass:

    weasled out of obligations? I’d venture to bet money their benefit guide said they don’t cover nutritional supplements… Being upset that the insurance company isn’t paying for it would be like being mad that a machine advertised to play taps doesn’t play cd’s too. Very unfortunate situation, but the insurance company isn’t the bad guy in the matter…

  51. youbastid says:

    @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.

  52. RocktheDebit says:

    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.

  53. RocktheDebit says:

    @jenl1625:
    Sugar-free Jello: $18 for a twenty-four pack on Amazon. You cannot be serious.

  54. kkh says:

    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…

  55. RocktheDebit says:

    @hillsrovey: I think FSAs can be used on OTC drugs.

  56. Major-General says:

    @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.

  57. superchou says:

    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

  58. @josh42042: ha

  59. @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.)

  60. guspaz says:

    @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.

  61. goodkitty says:

    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.

  62. trollkiller says:

    @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.

  63. matt1978 says:

    @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.

  64. trollkiller says:

    @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.

  65. trollkiller says:

    @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.

  66. justthisoncemore says:

    @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.

  67. trollkiller says:

    @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.

  68. trollkiller says:

    @goodkitty: Clarification: I was talking about the total bill to the insurance company, not the co-pay.

  69. john42 says:

    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?

  70. Greg L says:

    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.

  71. crazylady says:

    @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.

  72. Chalhubstein says:

    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.

  73. trollkiller says:

    @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?

  74. trollkiller says:

    @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.

  75. mconfoy says:

    @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.

  76. mconfoy says:

    @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.

  77. mconfoy says:

    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.

  78. humphrmi says:

    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.

  79. jwissick says:

    Then get the Dr to prescribe a feeding tube. Insurance will pay for that then she can eat. There are alternatives.

  80. Kajj says:

    @humphrmi: You are a mite late if you’re trying to troll up this thread.

  81. elislider says:

    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…

  82. warf0x0r says:

    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.

  83. Apoch says:

    @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.

  84. SuperSally says:

    @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.

  85. Boberto says:

    @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.

  86. Boberto says:

    @Mr_Human: That’s an interesting comment. Could you please expand on it?

  87. jenl1625 says:

    @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.

  88. Ajh says:

    @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.

  89. timmus says:

    Formula which costs $1,200 a month? That shit had better be made from gold and silver.

  90. timmus says:

    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.

  91. trollkiller says:

    @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?

  92. trollkiller says:

    @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.

  93. trollkiller says:

    @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.

  94. trollkiller says:

    @supersally: Steroids vs. feeding tube, I think I would go the steroid route especially if I could use a topical like the Flovent.

  95. MsClear says:

    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.

  96. Amy Alkon says:

    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.

  97. CyGuy says:

    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).

  98. SuperSally says:

    @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.

  99. SuperSally says:

    @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.

  100. @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.)

  101. trollkiller says:

    @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.

  102. pastabatman says:

    @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.

  103. hobear23 says:

    So basically if her condition deteriorates to the point of needing the feeding tube, THEN the formula would be covered?? That is just asinine.

  104. mconfoy says:

    @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.

  105. mconfoy says:

    @trollkiller: and this has what to do with food allergies?

  106. swalve says:

    @superchou: Would canada cover this? I’d be sort of surprised.

  107. swalve says:

    @humphrmi: What the hell do you buy that costs over $1200 a month?

  108. trollkiller says:

    @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.

  109. trollkiller says:

    @mconfoy: and this has what to do with food allergies?

    I donno, try reading. You may discover that it is an effective treatment.

  110. SexierThanJesus says:

    I have to say, this thread was a complete trainwreck. I really enjoyed it.

  111. Tracy Ham and Eggs says:

    @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.

  112. gingerCE says:

    @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.

  113. trollkiller says:

    @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]

  114. trk182 says:

    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.

  115. coren says:

    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?

  116. Naomi says:

    @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…

  117. samurailynn says:

    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.

  118. trollkiller says:

    @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.

  119. kkh says:

    @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.

  120. youbastid says:

    @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.

  121. trollkiller says:

    @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.

  122. trollkiller says:

    @youbastid: Or it could have been a mistake for the insurance to have paid in the first place.

  123. gingerCE says:

    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.

  124. gingerCE says:

    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.

  125. youbastid says:

    @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.

  126. youbastid says:

    @youbastid: (procedures = treatments)

  127. trollkiller says:

    @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.

  128. edogat says:

    @youbastid I’d believe a cock-up like that of just about any company. They shouldn’t happen, but they do.

  129. youbastid says:

    @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.”

  130. hals000 says:

    @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.

  131. SuperSally says:

    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.

  132. ATTSlave says:

    Unfortunately they are looking at the child as a huge liability to the profitability of the account.

  133. SexierThanJesus says:

    @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….

  134. Red_Eye says:

    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.

  135. ShadowFalls says:

    @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?

  136. trollkiller says:

    @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”?

  137. @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.

  138. vaxman says:

    @scampy: You’re a sick prick

  139. wesrubix says:

    @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.

  140. trollkiller says:

    @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)

  141. vladthepaler says:

    Will the insurance company cover the feeding tube?

  142. Anonymous says:

    @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!

  143. Anonymous says:

    @swalve:
    Yeah, Canada would cover this

  144. apriljr says:

    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]

  145. amandakk says:

    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.