Greetings all.

I've been a member since 2010 but this is my first posting. I'm on a PEG tube which I use for all my nutrition; nothing is taken by mouth. My dietitian has me on Nutren 2.0, continuous feeding via a Zevex portable pump. Our health insurance has refused to cover the food so we're paying it all out of pocket. Our provider however, is proving inconsistent with their billing and it's creating a real hassle. In addition, they've just raised their rates by almost a dollar a can, adding nearly a hundred dollars to our monthly bill. We're already in debt up to our eyeballs with all the bills and this is making it worse. We're looking for a new provider and was wondering if anyone has any suggestions. We live in the Indianapolis area. I'm looking for someone who can provide the liquid food, the pump, the bags, etc. Any suggestions, ideas, or advice would be appreciated. Thanks.

Hi Woody!

You can go onto the Nestle website and search for their donation programs. There is a form your dietitian or doctor must fill out and fax. Nestle will give the patient a one time delivery of 12 cases of their formula. It is only certain kinds that they give for free. You will pay not one cent for anything, not even shipping! I got 12 cases of Nutren 1.5 last year from them so I know for a fact this program works. Here is the link to Nestle's customer service department. Send them an email asking about their donation program for liquid nutrition. They will give you the info you need to get some free cases.
Nestle Foods Contact Customer Service Info

Next place to go for help is the Oley Foundation's website. They run an exchange program. It matches people that have leftover formula, bags, syringes, etc with those in need. You can email them or call. Check their online list and see if what you need is available. You will be put in contact with people who have the extras. You will need to go get a money order to cover the S&H (usually about $16) to send to the person that has the item. When they get your money order they will send out your product. Make sure you dont wait til the last minute as this can take a 2 week turn around before you get your supplies.
Oley Foundation Equipment/Supplies Exchange

As far as the pump goes, that is something very expensive. I pay monthly for this. The darn medical supply company has a rule that after you pay for your equipment for a solid 24 months then it becomes yours to keep with no further charges. Sounds good but there is a catch. Every time your insurance changes the clock resets so I have now had the same pump for 3 years and I will still have 2 more years to go before its paid for. Quite a racket if you ask me. You can check on Amazon or ebay. If you buy from Amazon, PLEASE use the link at the top of the main forum pages so that OCF will get a small kickback.

Hope this info helps.

This is a big help. Thanks very much!

Glad I could help you Woody. Hope you are able to get some help with your formula and supplies. Its very expensive when on a tight budget or without insurance. My hospital had negotiated a 'reduced' rate of $75 per case for my formula. With using 4-5 cans a day a case runs out and the costs add up very quickly. My insurance company had always covered it then one day out of the blue they stopped covering any of the liquid nutrition formulas. I could have all the drain sponges, bags, syringes I wanted but they wouldnt pay one cent towards the special prescription formulas. Luckily I had an excellent nutritionist who pointed me in the right direction for help. That would be another avenue for you to check. Ask your nutritionist or even someone at the gastro doc's office if they have any formula available they could donate to you. Many hospitals carry several different kinds of formula and will give cases to needy patients.

Hi Woody,

I have 20 cans of Carnation high calorie instant breakfast and a co-worker who often visits Indy and could take it with him. E-mail me if you are interested.

That's pretty much what happened to me. Our insurance was covering everything and then they suddenly decided to stop covering the food, but cover the bags, syringes, etc without question. We tried to explain this is medically necessary since I can't take anything by mouth at this time but without success. But we'll check with the hospital, too, like you suggested. Thanks again.