My dad finished tx 9/13/05 and had his peg removed 10/4/05. Thanks to God and every other divine presence/energy he is eating normally again.
So, our issue is that we have all these cans of Isosouce-375 calorie a can and a bunch of Kangaroo gravity feed bags left. The med place wouldn't take them so we'd love to ship them to someone in the US.
I will check this post until Tuesday.

We too had a hard time finding someone to give these very expensive supplies.. finally a local hospice took them and was so grateful.. such a great feelong to have them appreciate the stuff as well as celebrating that my husband no longer needed them

We are giving the feeding tube supplies and 2CalHN suppliments to John's surgeon, who will pass them along to those in need. He was delighted we asked. Amy

I always considered myself lucky in regard to the fact that my insurance covered the cans of food and bags for tube feeding. When it came time to get rid of my stockpile, I asked my dietician. She told me that she would be happy to take it, as there are some people being treated at the cancer center who don't have insurance to cover those expensive items. Since I regularly have appointments at least monthly at the CCC, we just loaded up the cases and she came down with a wheelchair to load them into her office.

I felt a little bit better knowing that the supplies would be used for cancer patients. I had even the benefit of a donated case of food (at the time I was having problems digesting the stuff previously prescribed and she happened to have a different brand in her office for me to try before we ordered it)

Jen

Jen, you Were lucky. John Alden Ins.[now Assurant Health] has refused to cover John's 2CalHN. I guess we are lucky because John hated the stuff so much that he forced himself to eat by mouth[even tho he lost an additional 10-15 lbs]so we only had to buy it for about 4 1\2 months and have enough left over to give to someone else.

We could actually really use some if you can't find anyone to donate to. Lee will be on peg forever and our insurance does not cover any of it. He uses the syringe method to save on costs, but we spend over $300 month just on food. We really weren't prepared to be hit so hard financially. Anyway, we certainly would appreciate any you could spare. I feel so funny and a little ashamed to ask.
Thank You,
Doreen

Doreen, I would be happy to send what we have to you, if it is compatible with Lee's routine.. #1.a box of 60cc syringes with catheter tips,[latex-free]#2. 3 cases of TwoCal*HN [manufactured by Ross Nurtition} each 8 oz can contains 475 cal. We go to the next Dr. visit on Wed the 26 of Oct. so let me know before then if you can use them. Amy

Hi Amy,
That would be so helpful. I checked with the nutritionist and she said that would be fine for Lee. I can't thank you enough-not sure why our insurance does not cover-they are a real pain and have so many exclusions. When Lee had lymphoma 10 years ago, we had no out of pocket expenses and we were both able to work the whole time. This disease is a whole new animal. Anyway, let me know what you'd like me to do from here. Again, THANKS!
Doreen

This is my first time on the site since September. I think my subconscious needed a break from thinking about Oral Cancer for awhile after so many months having it rule our lives 24/7. I have been trying since Jack died on Aug. 17 to find someone to take the feeding supplies. Please send me a personal message so I know how to get things to you.

HIPPA is good in some ways, but the privacy sometimes goes too far when health professionals can't pass on valuable supplies.

Lowanne

The nurse-practitioner that works with my MO told me a really disturbing story about a patient they had who was very low income and had to have prescription PEG food and had no coverage for that. Medicaid wouldn't cover it because it was food. So he went to the food stamp program and asked if his food stamps could be used to pay for part of it. Nope. Because according to the food stamp program it is a medical expense!

I agree I feel very lucky my insurance covers my expenses for this, at least partially, even though I've had to fight with them about it. Assuming I do get off the PEG eventually, I'll be glad to send leftovers to anyone here who needs them.

Nelie

Nelie - Did you strike a particular argument with your insurance company that tipped them to help pay for your peg supplies?? I have been battling my company with no luck for two and half years. What worked for you? What I've been doing hasn't worked. The stuff is really expensive and I'll likely have a peg till whenever. Tom

Well, I called them to begin with and asked if my policy would cover the Jevity and they said yes, with a letter of medical necessity from my doctor. My medical oncologists' office took care of the letter, although really it seems to me either the radiation oncologist or the ENT could have done it. But the MO's office has the most experience, I think, in terms of knowing what insurance companies want ro hear, they're willing to call the insurance companies and argue about a decision too, and they offered to do it (they also successfully got my prescription drug insurance company--a different policy--to pay for twice as many Zofran pills as they were going to pay for at first--not totally sure how).

So they sent a letter of medical necessity to the medical supply company that ships the Jevity to me (called Lincare, I'm not sure if they do this nationally or not) and Lincare claims they sent it on to the insurance co. Two months later the insurance co. was saying they didn't get it. So the MO sent the letter again directly to the insurance co. Just to eb safe I also had Lincare send another copy of the original letter.

Another two months go by and still no payment of the growing Lincare bills. My husband calls the insurance co. (it was still pretty painful for me to talk then) and they say they can't tell him the status of a claim because he isn't me (which is wierd because he's called them with questions about other claims related to all the gazillion bills we've gotten for my treatment and they gave him the info. he needed) BUT they DO say that IF they got a letter of medical necessity there should be no problem. Two more weeks go by, another unpaid bill, and I call them and after a LOOONG time on hold I'm told that the reason they haven't paid is ebcuase Lincare added somehting to their bill that "made it look like the wrong billing code. It's stuck in our system because of that". Well could they change it to the RIGHT billing code so it unsticks? Yes, he THINKS they could do that.

At last some of the bills get paid.

They're now holding up payment on the MRI and PET scan I had as a followup to treatment back in Spetember. They requested extra justification from my ENT, his office sent it but now its under review and the "the review process is backed up".

It seems so unfair that when you're feeling really sick is when you have to spend so much time checking bills and argue with insurance companies over things!

By the way, I'm not sure how long my insurance will cover it. When I called and asked to begin with I remember they said someting about limits of coverage and I can't recall if it was a cap on the amount each year or maybe if it was a cap on how long following a treatment because I was so sure that wouldn't be an issue but now of course it may be.

I'm still waiting for a personal email or whatever giving me a person's address who can use my extra feeding supplies. I found out the nursing school will take them to use in the student's training. I would certainly prefer that they go to a person that has no insurance coverage for these things.

Lowanne

Lowanne, If there is a hospice near you I would recommend calling them and seeing if they'll take it. I know someone who is a social worker at our local hospice and PEG tubes are really common at the end of life and there are always folks who don't have insurance to cover the expense. Nelie

I am a relative newbie here, just finished my second week of radiation (ten shots down, only 27 to go!), so I might be barking up the wrong tree here, because y'all may be talking about very specialized canned meals...

However, in one of the guides and pamphlets I was given, published by a prof at the H. Lee Moffitt Cancer Center in Tampa, under Nutritional Supplements (like Boost and Ensure) was the following statement, "A economical alternative to canned supplements is powdered Carnation Instant Breakfast. Glucerna may be recommended for diabetics."

Additionally, one of my RadOncNurses recommended CIB.

Be kinda hard to say Carnation Instant Breakfast didn't qualify for food stamps

It really pays to read the labels on this stuf also because there are a whole bunch of different Boost and Ensure products out there, as well as store brands like Wal*Mart, Safeway, etc,.

Also, the ones marked Plus seem to all be 350 calories in the same size container at the same price, so one can get more for less money, less swallowing or less time, whichever tends to be most important to you at the current time.

Helps to make the rounds of these stores (be sure to get a store discount card if they have them -- Use a fake name if you don't want to be ID'd in marketing systems) to see what's on sale as something usually is somewhere!

Pete

Nelie, Would you consider putting your experience with your Ins. Co on the Ins. Issues board? I have been fighting weekly with John's Ins co-John Alden since April. It's been a nightmare. Maybe we can give people some ammunition to use when they run into road blocks.
Lowanne, John's oncologist said he would take the unused 2CalHN that we were using, and give it to patients who were in need. Amy

Amy,

I'd be glad to put my experience on the insurance issues but I don't know how helpful it would be to someone who doesn't have my insurance plan. I don't seem to have run into as many roadblocks as some people. They have very clear provisions about covering the prescription PEG food if it's medically necessary. I have no idea what my medical oncologist's office put in the letter of medical necessity that convinced them it was/is in my case but it seems to have worked once they got several copies of the letter!

I just had to call them again, Friday, about a new statement where they had again refused to cover the latest shipments of Jevity because there is some kind of incorrect billing code that Lincare is using. When I call, they take the billing code off and send it through the system again and it gets paid (at least so far).

Nelie

Here's one of the things that bugs me. There is a small print disclaimer in John's policy that states "not all coverage questions can be addresed in your policy", which leaves them great latitude in the midle of an illness to define what they will and will not cover. Even tho John's surgeon\oncogolist wrote John Alden Ins. and explained that John's feeding tube nutrients were absolutely necessary to his survival and by prescription only, they have refused to pay for them. This is only 1 battle of many with this company. I just think maybe if we pool our experiences and battles we won or lost- it might help someone down the road. And, John Alden[now Assurant Health] is actively advertising to sell new medical ins. policies on national T.V. I could not recommend them to anyone. Amy

Amy,

I'm sure my policy has that in small print somewhere too but apparently prescription PEG food is soemthing that IS addressed directly in their policy. Its a good lesson, but too late for most people who find their way here, if you have a choice of insurers. Pick the one that spells out coverage for many contingencies!