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

Now that is seriously screwed up....

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

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.

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

@no.no.notorious:

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

@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.

@scampy: wow. are you serious?

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.

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.

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.

Insurance doesn't cover food.

"A doctor-prescribed formula"

So does that count as a prescription?

@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?

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

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.

@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?

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??

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

@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!

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.

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.

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*

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

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*"

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.

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

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.

@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.

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.

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

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

[www.weau.com]

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.

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.

@CurbRunner: Insurance is NOT charity.

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..

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

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

@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?

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.

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.

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

@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?

@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).

@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.

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.

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.

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

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.

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).