Insurance paying for tube feeding formula? UPDATE!!! pg 2 post #30

[Mono~rail]

We have Blue Cross Blue Shield California, and my friend who has BCBS Federal gets her Dd's Pediasure covered through their insurance. I'm having a hard time getting anyone at our company's BCBS number to talk to me. They won't give me a case worker. They said that they will assign one if it is felt necessary. We've always had a caseworker for Lydia with our other insurance companies.

Lydia is strictly tube fed. She is total oral aversion r/t SID. My friend said that BCBS will cover the tube feeding formula if the kid is totally tube fed which Lydia is. The woman who handles our account at the home medical supply said that she has about 5 kids that BCBS covers their formula. She filed a claim with BCBS CA but she hasn't heard back from them yet. Possibly the holidays have slowed the process down. I'm just really anxious trying to get it covered.

Does anyone have any experience with a similar situation?

The Pediasure is expensive and getting even more expensive the older she gets and her calorie needs increase. Currently, she takes 4 bottles in 24 hrs. We buy Pediasure from eBay when we can get it cheaper than we can buy the store brand for. When our eBay stockpiles run out, I buy the Kroger store brand until we can get lucky again on eBay.

 

[Cheshire Figment]

I would suggest (if you are in a large company) talking to your HR Benefits Officer. If the company does not have one then try to talk to the HR Director. Be ready to provide documentation about what you have said. Normally those people have access to special telephone numbers.

 

[Mickey'snewestfan]

We had the opposite problem with BCBS, if you can imagine that.

Our BCBS policy specifically did not cover either durable medical equipment or "nutritional support". They didn't cover the apnea monitor or the nebulizer because they classified both as DME. Luckily (because he was still technically a foster child) Medicaid covered both. When it came to the feeding pump and the formula I wanted Medicaid to cover them as well. Why? In the case of the feeding pump it's because Medicaid would cover whichever one my doctor wrote a prescription for, while BCBS only covered a Kangaroo pump that was attached to an IV pole. My son was fed 20 hours a day, and used the nebulizer 2 of the remaining 4 hours a day. Handling a very active toddler who isn't allowed to move more than a foot or two from an piece of medical apparatur for 22 hours a day is not easy. On the other hand, Medicaid would have paid for a pump that fit in a little backpack -- giving him unrestricted mobility. I proposed to BCBS that they let me pay the difference between the two pumps but they refused. As for the formula, BCBS covered it, but on their own terms. Sometimes they'd show up a week late. Since it was a prescription formula and it was the ONLY source of nutrition he got going without it for a week was a problem. They also frequently tried to deliver on the wrong day or to the wrong house and when they weren't successful they'd just give up. We ended up "fixing" this by having them deliver extra every month so I'd have a backup. Then when he weaned they wouldn't stop. I ended up donating a 6 month supply to our local children's hospital because they simply wouldn't stop.

In the end we sort of fixed the issue with the pump -- I requested that they pay for ambulance transport to all his doctor's appointments because the IV pole wouldn't fit in a car. They then paid for a large backpack model that I could wear (he couldn't be more than a couple of feet from me or whatever it was hanging on, but it was still a big improvement since it meant we could go to the park, daycare, the grocery store etc . . .).

Anyway, I called and spoke to everyone I could. The thing that worked a little was being very explicit about what was going on. If I said "my little boy is basically not able to walk because of this pole, he can't go to the park or swing on a swing, or even go into our back yard", it worked at least some of the time because people would become sympathetic and offer to go at least the extra mile. You might want to describe in detail the sacrifices your children are making to provide your daughter with the formula.

 

[Mono~rail]

I would suggest (if you are in a large company) talking to your HR Benefits Officer. If the company does not have one then try to talk to the HR Director. Be ready to provide documentation about what you have said. Normally those people have access to special telephone numbers.

I had not thought of that idea! Thanks!

 

[Mono~rail]

We had the opposite problem with BCBS, if you can imagine that.

Our BCBS policy specifically did not cover either durable medical equipment or "nutritional support".

Sorry you had such a hard time with your kiddo!

 

[Mickey'snewestfan]

Sorry you had such a hard time with your kiddo!

Thanks! It sounds like your situation is even worse -- at least I got something covered. I hope things turn around for you.

I also wanted to let you know how different things are for us now in hopes that it will help you see the light at the end of the tunnel: My son (100% gtube fed at 2) is 7. He has been 100% orally fed since he was 3, tube free since 3 1/2. He eats just about everything (won't eat things like brussel sprouts but what 7 year old does?) and is well above average for height and weight (was off the charts small until 4). He's also developmentally right on target, although he received a little bit of speech therapy for articulation to get him to that point. His only medical issues at this point are some well controlled asthma and allergies.

It sounds like his issues were different from your daughter's but I thought it might be reassuring to hear how dramtically things can change in a few short years.

By the way, both of your daughters are quite beautiful! But I bet you already knew that.

 

[Mono~rail]

Our insurance has always paid for her pump, pole, therapy, surgeries, etc. We've never had a problem with anything except getting her Pediasure covered. United denied the requests because "Pediasure can be bought at any supermarket without a prescription, yada, yada, yada." BCBS I can't get anyone to talk to me.

United would only pay for a Ross Patrol. BCBS pays for a Kangaroo Pet!

I like hearing stories like your son's. Lydia is painfully small - at 22 months old she is about the size of a 12 month old. We went to Baylor Med Center in Dallas a few weeks ago to their feeding clinic. We've been working on their suggestions, but it is just such a slow, uphill climb.

 

[Mono~rail]

First I called the customer service line on our card. The CS rep gave me the same denial (Pediasure can be bought off the supermarket shelf, therefore, insurance won't cover it). Once again, I asked for a case manager (explaining that Lydia has been assigned a case manager with our 3 previous insurance companies). She gave me the same denial as I got before (BCBS will assign a CM when they feel it is necessary).

I explained everything that I put in my above posts about knowing others in my network of moms with special needs kids who have BCBS and have case managers who get the Pediasure covered. She said she couldn't answer for that but the answer to all my requests was a firm no.

I called dh and told him about the suggestions I've been given here. He gave me the # for the HR person that worked with us when dh was signing on with the company. I'm fairly certain that he is the head of HR for dh's company. I gave him a call and explained everything. He is now working on both getting us a case manager for Lydia and getting her Pediasure covered!

I'll update when he calls me back! I feel confident that he will do all he can to help us. He said he would call me back before the end of the day to let me know any progress he makes!

 

[jojoz719397]

I only have one second but I just wanted to let you know that I fought this battle and finally won. Please feel free to email me at jojo719397@aol.com and I will share my files, tips, and lessons learned. There is also some great links I would be more than happy to share. blessings, Janel

 

[Mono~rail]

The HR guy hasn't called me back.

Dh sent me our plan benefits booklet yesterday. I looked all through it, and at best all I could find was wording about special circumstances.

I called BC again this morning, and the CS rep told me the thing about being bought off the supermarket shelf. I told her I just wanted her to point it out to me in the plan book where it specifically says it isn't covered. She got smart alecky with me and said, "The plan doesn't cover any food. You are expected to buy your child's food the same way I'm expected to buy my child's food." I told her, "This isn't regular food. Her pediasure costs us just as much or more per month as the grocery bill for the other 4 of us combined."

I asked her if it would fall under special circumstances. She asked me what were our special circumstances (in a smart alecky tone). I told her that Lydia is totally 100% tube fed and her primary diagnosis are failure to thrive (she's 22 months old and about the size of a 12 month old) and oral aversion. She put me on hold and came back and said she asked her supervisor who told her that she had answered my questions 2 days ago and she wasn't going to answer them again.

I'm giving up on this one. It would have been nice if it were covered under out plan, but it isn't so we will trudge along. At least now I know that it isn't covered because it would suck to spend all that money then find out it is covered.

 

[Mono~rail]

I only have one second but I just wanted to let you know that I fought this battle and finally won. Please feel free to email me at jojo719397@aol.com and I will share my files, tips, and lessons learned. There is also some great links I would be more than happy to share. blessings, Janel

Your response to my email went into my spam folder.

Could you PM or post the info in this thead?

 

[Karalynn]

Hi! You have probably already tried this, but has her pediatrician wrote a rx out for the pediasure with a letter of necessity for the insurance company? (This should include her dx) Make sure you document every conversation you have with the ins co and who it was you spoke with. I wouldn't give up, as much as a battle it is. Remeber the squeeky wheel gets the grease!!!!!! (in other words, be a major b#$@!) I would have your pediatricians office try and send a preauthorization to the ins so you can have a hard copy of the rejection, something you can fight and appeal with rather than just some person on the other end of the phone. It is so obsurd that they cover the equipment for the feeding tube, and I'm sure they paid for the actual surgery right??? why do they not see the need for the nutrition needed to sustain her?? UGH!! Makes my head want to pop off!!!

Ok, here is another idea,,, is there a rx type suppliment that her dr could prescribe that is not available in the stores? Probably twice as expensive, but if the ins is refusing 'Pediasure' because of its availability it could be worth a try.

Do you have any idea if she would qualify for state funded insurance due to her dx? It may be that you would have to buy into it if you are above the income levels, but it is usally worth it. I live in Mass and my daughter has cp, we have private health ins as our primary and masshealth as her secondary only. I do have to pay for the mass health, but they cover just about everything her primary doesn't. Dr & rx copays, DME, Diapers, outpatient PT.

Good luck to you!!

Kara

 

[Mono~rail]

Thanks, Karalynn! That CS rep I talked to this morning mad me feel sorta stupid - like I don't think we should be responsible for feeding our kids. Pediasure is expensive, and isn't that why we pay for insurance every month - to help reduce health costs? The only thing equivalent is if the rest of us were eating filet mignon for dinner every night! She takes Pediasure out of medical necessity.

She takes 4 bottles a day! Right now we are in the process of increasing her five bolus feedings during the day from 4 ounces up to 5 ounces because she didn't gain any weight this month. I think we have her night time drip maxed out at 40cc/hr.

The nursing director at our pediatrician's office has left for the day, but on Monday I will call her and ask her to petition BC with a letter and rx.

I did luck up on an eBay auction today so I got about two weeks worth of Pediasure for $5 less than it would cost to buy the store brand!

 

[eternaldisneyfan]

As a help in the interum, oley.org offers various free tube feeding formulas (you just pay for shipping). Oley is a support/advocacy group for people who are tube fed, IV fed and/or a combo

 

[Mason7AK]

I just had to post in reply to your delimma Mono-rail!
I have two children that are tube fed. One is 100% tube-fed and the other does eat orally also, but has trouble gaining weight (he is four and only weighs 29 pounds), so I can sympathize with you!
Our insurance covers both their formulas. We have Aetna Healthcare.
My son uses a formula called Peptamen Jr. and it cannot be bought off the shelf. It is easily digestible and has the same amount of calories as a can of pediasure. You might check into changing your daughter over to that. Changing to an off the shelf formula in combination with a prescription from her pediatrician could do the trick!
Also, the insurance HAS to provide you with a letter of denial if your pediatrician writes a script. If you just call and ask like you have done, they don't have to provide the written denial. Once you get a written letter of denial, then you can appeal the decision. Appeals work a good amount of time for us on various issues (covering PT, OT, equipment, etc).
Good luck!! Insurance companies make me crazy! I wish the people who work for them could live a day in our shoes - then they might not be so smart alecky!!!
Angela

 

[Mono~rail]

As a help in the interum, oley.org offers various free tube feeding formulas (you just pay for shipping). Oley is a support/advocacy group for people who are tube fed, IV fed and/or a combo

I went and signed up with the site! Thanks so much!

 

[Mono~rail]

Also, the insurance HAS to provide you with a letter of denial if your pediatrician writes a script. If you just call and ask like you have done, they don't have to provide the written denial. Once you get a written letter of denial, then you can appeal the decision. Appeals work a good amount of time for us on various issues (covering PT, OT, equipment, etc).
Good luck!! Insurance companies make me crazy! I wish the people who work for them could live a day in our shoes - then they might not be so smart alecky!!!
Angela

I'm planning to get a rx and letter of medical necessity faxed to our insurance Monday. I'm not sure if the letter should come from our pediatrician or our pediatric GI specialist. This question is for anyone - which would carry more weight? I'm thinking the GI specialist, but I'm not sure.

If they deny that then we will appeal. Thanks so much for that tip.

As a last resort we will try a rx for a tube formula not sold over the counter. Lydia's system is so touchy though. We finally got her straight on Pediasure. Even now that we are increasing her to 5 ounces it is going to take us about 2 weeks to work up that extra ounce. We have to bump her feeding up by 5cc for a few days before we can increase again. If we feed her too much, she dumps.

Thanks for all the help and advice from everyone! We need all we can get so if anyone else can offer any please do!

 

[Karalynn]

I would go with the Specialist since this is who is managing the care for this. I'm keeping my fingers crossed for ya!!

 

[Mono~rail]

I would go with the Specialist since this is who is managing the care for this. I'm keeping my fingers crossed for ya!!

Thanks!

 

[dclfun]

I just want to chime in and say I'm rooting for you. I've never had a challenge getting my tube feeding covered by insurance or even by Medicare before I went back to work and can't imagine dealing with the expense of paying for it out of pocket. What really disturbs me is the attitude of the representative,.. accusing the OP of not wanting to pay to feed her daughter. Walk a mile in our shoes! I'll never forget the hurtful comment a driver made who picked up my now-deceased husband for wheelchair transport to the dialysis center. He actually told him, " I hope you know how much your transportation is costing the public. You should get there yourself.". The fact that such a comment was made hurt us deeply. No one should accuse someone of such a thing. I hope this all works out, and I hope that representative is reported for her harmful and hurtful attitude. ---Kathy