Why is enteral nutrition not used more in the U.S?

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Poppysocks
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   Posted 8/4/2010 6:53 PM (GMT -7)   
I posted this on another crohns website, but I'd like some feedback here too.

I've just read numerous research articles on Enteral Nutrition and how the remission rates are similar to prednisone, and you don't have to be on drugs. Yet it is under prescribed in the U.S and when doctors do prescribe it, insurance doesn't cover. It seems to be covered more often over in Europe, what is the deal?

Writer
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   Posted 8/4/2010 7:05 PM (GMT -7)   
Because it's not used here often, many doctors aren't very familiar with it (didn't see it during their training) and don't realize how well it works. They're also worried that patients won't comply with the treatment. Most will prescribe it if the patient insists, but they usually won't think to offer it otherwise. Insurance coverage is an issue because enteral nutrition is both food and medical treatment, and health insurers don't cover food so they use that as an excuse to refuse coverage. That said, in some states insurers are required to cover it for patients with Crohn's, and many people are able to obtain coverage in other states by going through the appeals process with their insurer.

Poppysocks
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   Posted 8/4/2010 7:45 PM (GMT -7)   
Thanks for the quick response. I actually sent a long email to you like an hour ago. Do you know which states are required to cover it. I did a look and couldn't find the answer. And how would I go about appealing if my insurance rejected my request? Thank you.

GDen
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   Posted 8/4/2010 7:49 PM (GMT -7)   
I asked my gastro about TPN and he said it's a last resort because the GI tract atrophies and there are nutrition/infection problems.
Cimzia, Asacol

Writer
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   Posted 8/4/2010 7:57 PM (GMT -7)   
GDen, TPN (total parenteral nutrition) is different from enteral nutrition. Because it's delivered intravenously, there is a risk of infection and intestinal atrophy. Enteral nutrition, being taken by mouth or tube, doesn't have the same disadvantages.
 
Poppysocks, I just answered your email (your state does not have mandatory coverage). Ask your insurance company how to start the appeals process. They will have such a process, but the protocol differs from company to company.

vixen
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   Posted 8/5/2010 2:17 AM (GMT -7)   
I don't know what the deal is in the US but I believe there are some similarities in the UK. I say this because the consultant my son had on diagnosis had only just moved to our local hospital from another across the other side of the country. He had good results with enteral nutrition at his previous hospital and so was keen to use it on son. However, coming under a different Primary Care Trust he wasn't sure whether it was permitted, fortunately it was and son was on total enteral nutrition for 7 1/2 weeks, and some 7 months later continues on a bottle a day to supplement his diet/put some weight on.
So I do think it is down to whether the consultant is familiar with it, and although here we do not have to worry about insurance coverage I guess there are similar isues regarding whether the Primary Care Trust will allow it.
Unfortunately son still did need the drugs as well.

randynoguts
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   Posted 8/5/2010 3:54 AM (GMT -7)   
its one of the main things at the VA where i get treatment. they hand out ensure like water. its way less expensive than TPN so they jump on it if they can . depends on the patient as well of course.
randynoguts 



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psygirl6
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   Posted 8/5/2010 10:31 AM (GMT -7)   
The sad thing is that not only is it not covered by health insurance, including medicare and medicaid, but it is not covered by food stamps. I know because I have all 3 and I had to pay so much money out of pocket, when all ready on a severely bad budget. The sad thing was I am unable to digest that. I think it is crazy that neither one of them cover it, especially when people like myself can only depend on that for nutrition needs. Yet, they can cover bad junk foods.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.

Poppysocks
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   Posted 8/5/2010 12:55 PM (GMT -7)   
I'm in the same position. I've already been rejected once for enteral nutrition. I have an appointment next Tuesday and I'll have my doc make a request to my insurance company that I get it, if they reject it again, I'll appeal. And if they reject it after that I'm not sure what I will do. There's gotta be somebody to contact to get this crap reversed, that is so unfair that they are unwilling to provide this to anybody who has a disease like Crohns.

GDen
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   Posted 8/5/2010 1:00 PM (GMT -7)   
What kind of stuff do doctors prescribe for enteral nutrition -- is it pretty much Ensure or something like that?
Cimzia, Asacol

Poppysocks
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   Posted 8/5/2010 1:29 PM (GMT -7)   
I think it would usually be something a little more specialized, not something you usually get OTC. I think Writer recommended Vivonex TEN, and Vital HN. I've heard Modulen being used quite a bit, also Pivot 1.5 cal, and Nutren. If you look at the prices for a case of this stuff, there is simply no way people could stay on this stuff for a significant amount of time. Even for people who have money.

beave
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   Posted 8/5/2010 2:13 PM (GMT -7)   
Ensure isn't really enteral nutrition. In Ensure, and Boost, and similar products, there are fats, carbs (complex and simple) and proteins, along with some vitamins and minerals, all mixed in water. These are relatively easy to digest - but some digestion is still required to break down the fats, the sugars and carbs, and the proteins.

In a true enteral nutrition supplement, the fats are broken down already; the sugars are broken down already (no complex carbs); and the proteins are broken down to amino acids. No digestion is required - just absorption. The drawback is that when the fats, sugars, and proteins are broken down like this, the taste can be pretty bad, if not downright intolerable, so sometimes these formulations have to be given through a nasogastric tube (straight into the stomach without having to drink them) if the patient can't drink them normally.

By the way, as a side note, enteral nutrition is often confused with parenteral nutrition, as in the posts above. To remedy this confusion, think of it this way: Enteral refers to the small bowel, an example being enteritis (inflammation of small bowel). The prefix par- usually means "around", so in this case, enteral nutrition means using the small bowel, while parenteral nutrition means going around (or bypassing) the small bowel.

GDen
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   Posted 8/5/2010 2:19 PM (GMT -7)   
I priced some of that stuff. Looks like Pivot is about $250-300 for a case of 24. How long does that last? I assume you have to consume more than one a day.
Cimzia, Asacol

Poppysocks
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   Posted 8/5/2010 2:38 PM (GMT -7)   
beave said...
Ensure isn't really enteral nutrition. In Ensure, and Boost, and similar products, there are fats, carbs (complex and simple) and proteins, along with some vitamins and minerals, all mixed in water. These are relatively easy to digest - but some digestion is still required to break down the fats, the sugars and carbs, and the proteins.

In a true enteral nutrition supplement, the fats are broken down already; the sugars are broken down already (no complex carbs); and the proteins are broken down to amino acids. No digestion is required - just absorption. The drawback is that when the fats, sugars, and proteins are broken down like this, the taste can be pretty bad, if not downright intolerable, so sometimes these formulations have to be given through a nasogastric tube (straight into the stomach without having to drink them) if the patient can't drink them normally.

By the way, as a side note, enteral nutrition is often confused with parenteral nutrition, as in the posts above. To remedy this confusion, think of it this way: Enteral refers to the small bowel, an example being enteritis (inflammation of small bowel). The prefix par- usually means "around", so in this case, enteral nutrition means using the small bowel, while parenteral nutrition means going around (or bypassing) the small bowel.

Thank you beave for clarifying this. Parenteral is nutrition through an IV, for further clarification.

And GDen

I would think that would only last a couple days. I'm guessing you'd need about 6 cans a day, depending on height and weight. I'm not positive though. So you can see why it's pretty much impossible to afford a product like that. If anyone could clarify that would be great.

ivy6
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   Posted 8/5/2010 2:59 PM (GMT -7)   
GDen, try reading the nutrition link in my sig.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

GDen
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   Posted 8/5/2010 4:06 PM (GMT -7)   
I think I saw that each bottle or whatever has about 300 calories, so, yep, probably at least 6 per day. Ouch!

Ivy6 -- thanks, lots of good reading.
Cimzia, Asacol

ivy6
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   Posted 8/5/2010 4:12 PM (GMT -7)   
It's quite doable, GDen, especially when you consider that you're not upsetting your gut by eating "real" food.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

ivy6
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   Posted 8/5/2010 4:12 PM (GMT -7)   

jpnutritionfirst
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   Posted 8/5/2010 4:15 PM (GMT -7)   
I believe the main reason doctors don't prescribe it is that it doesn't work as fast as prednisone. It may take months to get better on an elemental formula. Also most of the elemental formulas taste horrible and doctors don't think patients will comply with it since you have to drink that exclusively for months. There are better tasting ones out there now like Peptamen OS by Nestle, but it is pretty costly. I keep a case of it on hand in my pantry in case I get a flare. I've never tried using it yet though. I will never use prednisone again so elemental formula is the way to go for me.

ALSO OF NOTE

Elemental diets DO NOT WORK for ulcerative colitis. I've made this mistake in the past. They only have been shown to work for Crohn's disease.
Crohn's diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Low-dose naltrexone since 7/5/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D

GDen
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   Posted 8/5/2010 4:42 PM (GMT -7)   
ivy6 said...
Oh, or did you mean "ouch" financially?

Yes, that! I imagine enteral nutrition is pretty easy on the system physically.
Cimzia, Asacol

Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 8/5/2010 7:53 PM (GMT -7)   
Financial ouch, definitely!

Lots of good information already posted by those who have contributed to the thread. Just to add a couple of clarifications . . . Enteral nutrition refers to any of the liquid diets, whether whole protein like Ensure or Boost or the elemental diets that are made with amino acids. They all work about the same; some people respond better to one type of formula and others to another. Like steroids, they generally work quickly. Most people who are going to respond see substantial improvement within the first 10 days although healing fisulas can require considerable patience.

Poppysocks
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Date Joined Aug 2010
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   Posted 8/6/2010 12:19 AM (GMT -7)   
Quick question...

So there's elemental, semi elemental, and polymeric formulas...

Would Ensure and boost be considered a "polymeric" formula? Can't seem to find the answer anywhere.

EDIT- nevermind, Ensure is a polymeric formula...Thanx again Writer/Margaret

Post Edited (Poppysocks) : 8/6/2010 1:29:42 AM (GMT-6)


randynoguts
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   Posted 8/6/2010 12:26 AM (GMT -7)   
i didnt mean that ensure was technically a EN product. sorry for the confusion. there are several companies that make specific formulas from gluten free to sugar free etc.. the best thing would be to ask a registered dietician about it. i cant remember what brand mine was back when i had the TPN and a J tube. i know that it was tan and stunk when we injected it into the tube.. and it would come back up too even though it never went in my stomach! eeww.
randynoguts 



     http://www.geocities.com/randynogutsweb/

Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 8/6/2010 6:21 AM (GMT -7)   
No, Randy, you were right, Ensure IS an enteral nutrition product. There are even a handful of case reports and studies of its use in patients with Crohn's, but published so long ago that few people remember.
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