InfantReflux.Org Forums: Going to the TOP!!

Author

Message

AshtynsMom
Junior Member

Joined: 09 January 2004
Location: United States
Online Status: Offline
Posts: 2065

Topic: Going to the TOP!!
Posted: 16 August 2005 at 5:49pm

(link to another thread addressing this issue- go to it after reading through here

: http://www.infantreflux.org/forum/forum_posts.asp?TID=13524&KW=going+insurance&PN=1)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Laura suggested that we repost anything we may have saved from NOv 2004 till now. I happened to save the "Going To the Top" link for people that need help with getting things done faster for our little ones!

Here it is:

Help From Companies:

http://finance.yahoo.com/search

(1) If you go to the website & look for the company, you'll find the main switchboard ph # plus the names of the higher ups (CEO, etc.). \

2) THEN, you find out the name & fax # of the SECRETARY (now called administrative assistant?) to the CEO...

3) THEN, you FAX everything to HER (usually it's a 'her' - might be a he

4) THEN you get RESULTS!!!!!!!!!!!

Edited by hellbennt - 15 July 2011 at 8:48am

Sherry(34)Zack(43)
Littleton, Colorado
Ashtyn 11/13/03
Prevacid Solutabs 15mg, feeding therapy

IP Logged

hellbennt
Admin Group

Joined: 28 August 2003
Location: United States
Online Status: Offline
Posts: 13402

Posted: 16 August 2005 at 8:34pm

Sherry, you ROCK!!!

Here's more insurance related info:

(dealing w/ Neocate) http://www.infantreflux.org/forum/forum_posts.asp?TID=2291&a mp;a mp;a mp;a mp;a mp;a mp;PN=1&TPN=1

tips on how to write an appeal to insurance: http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/insura ncedenial.htm?OpenDocument (thanks Emmy!)

how to get insurance to cover neocate, etc: http://www.infantreflux.org/forum/forum_posts.asp?TID=5603

getting elemental formula covered:
http://www.childrensmagic.org/index.htm

contact your congressperson: http://www.aarda.org/congress_connect.php

Website for people who cannot afford their meds:

http://www.needymeds.com/indices/brandname.shtml

It has a listing of medications & the manufacturers that have
assistance programs, many times they provide the medicine for free if
you meet their criteria.

You can contact 1-800-830-1015 for the TAP Prevacid Patient Assistance Program. They GIVE prevacid (capsules only) away for free if you meet certain guidelines. You can even have partial prescription drug coverage.

Edited by hellbennt - 18 January 2008 at 7:51pm

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

IP Logged

hellbennt
Admin Group

Joined: 28 August 2003
Location: United States
Online Status: Offline
Posts: 13402

Posted: 05 September 2005 at 8:34pm

from google's cache, here's how Janice went to THE TOP:

As many of you know,I have been involved in a long battle with my insurance company (since August) to get them to cover my daughter's formula (neocate) We have won our battle, but it has occured to me that I may have won the battle, but we have not won the war. I am just one of the many that are trying to get help in providing what is best for our children. In many cases, like ours, it is a matter of life and death. I am going to use this forum to provide help to anyone that desires and/or needs it. You all have made such a difference in my life that i see this as my chance to possibly help some of you.

I started this process in August of last year when I sent in our original claim. It was quickly denied because our insurance company did not cover "nutritional supplements" At the time, I thought that I had done all that I could. Then I saw a thread on this forum looking for Dallas Neocate users. It was a local investigative reporter looking to do a news story on the difficulty to get insurance to pay for this very expensive formula. We did the story in early September and he has been very helpful to me. He helped me aquire copies of the state law and different ways to get the insurance company to pay for the Neocate. He helped me to get the appeal process started both with the insurance company and with the state. I sent in our first appeal on September 24th and the ins comp dragged their feet for 3 months until I finally had the equivilent of a temper tantrum on their phone and was given ANOTHER denial. This was on January 5th. I made several posts about this as it was happening and you all kept me from becoming discouraged. On the suggestions posted, I WENT TO THE TOP and got the fax # for the assistant to the CEO and faxed her all of our info. We got an approval within 24 hours! SKIP THE MIDDLEMAN, GO RIGHT TO THE TOP!!!

I want to thank all of you who have helped me win this fight. Now I hope that I can help someone else win theirs.

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

IP Logged

hellbennt
Admin Group

Joined: 28 August 2003
Location: United States
Online Status: Offline
Posts: 13402

Posted: 05 September 2005 at 8:37pm

colemandl
Senior Member

Joined: 14 September 2004
Location: United States
Online Status: Offline
Posts: 147

Posted: 28 January 2005 at 10:13am \| IP Logged

I couldnt agree more with Janice....there is hope out there!! We too have personally won the battle and our Neocate is fully covered by insurance.

However, approval didnt come easily. I too had to battle with the insurance company for 4 months before I received approval. I made countless phone calls, faxed documentation, relayed medical records and eventually went straight to the top, albeit through the Human Resources Department at my husband's company. We were fortunate that they opened an Advocacy report for us, I emailed ALL of my phone call documentation to her and we had confirmed approval within the week. We were reimbursed for past Neocate claims and now receive our Neocate in monthly supply, directly paid for by our insurance company. Even our Ped GI was stunned, which makes my heart ache....for I think so many more would get reimbursement if they knew what to do! In my personal experience, dont rely on your Dr's office to handle this for you....take matters into your own hands and like Janice said, go straight to the TOP if need be.

Dont take NO for an answer.....remember, the squeaky wheel gets the grease!!!

In this process, I have received such a wealth of information. So please, I am here if any of you need advice or just a shoulder to lean on.

__________________
Deb (32) Jeff (34)

Noah (4/99) had GERD, Bradys, and sleep apnea - Now is asthmatic
Ashlyn (5/01)
Brennan (6/29/04) GERD, MSPI, Laryngomalacia, Aspiration, Neocate, Prevacid, Xopenex, Flovent

Janice
Senior Member

Joined: 13 September 2004
Location: United States
Online Status: Offline
Posts: 529

Posted: 28 January 2005 at 11:57am \| IP Logged

It is really amazing how much you learn

__________________
Janice
Samantha 6-25-04GERD/MSPI,Neocate
Lance 7-98 27wk ex-preemie,reflux
http://www.babiesonline.com/babies/s/samanthalauren/

Janice
Senior Member

Joined: 13 September 2004
Location: United States
Online Status: Offline
Posts: 529

Posted: 28 January 2005 at 12:28pm \| IP Logged

My Google search to get the # for the attorney general:

http://www.google.com/search?hl=en&client=firefox-a& rls=org.mozilla:en-US:official&q=attorney+general&sp ell=1

you can find your state

(this no longer works Dec '05)

here's more from Janice about battling insurance- it's a link to google's cache- hope it doesn't 'expire' http://64.233.187.104/search?q=cache:x8awN6vvRdcJ:www.infant reflux.org/forum/forum_posts.asp%3FTID%3D3213%26PN%3D0%26TPN %3D1+infantreflux+forum&hl=en

[the above link works, as of today Oct. 29, 2005, BUT THE LINKS FROM THE ABOVE LINK TAKE YOU TO UNRELATED, OFF-TOPIC PAGES]

Edited by hellbennt - 20 December 2005 at 1:59pm

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

IP Logged

AshtynsMom
Junior Member

Joined: 09 January 2004
Location: United States
Online Status: Offline
Posts: 2065

Posted: 07 November 2005 at 1:21am

bumping up

Sherry(34)Zack(43)
Littleton, Colorado
Ashtyn 11/13/03
Prevacid Solutabs 15mg, feeding therapy

IP Logged

hellbennt
Admin Group

Joined: 28 August 2003
Location: United States
Online Status: Offline
Posts: 13402

Posted: 20 December 2005 at 1:56pm

lovemysophia
Senior Member

Joined: 28 October 2004
Location: United States
Online Status: Offline
Posts: 311

Posted: 27 January 2005 at 12:47pm \| IP Logged

Hey Laura - heres a link I have given to a couple people . . .don't know if you already have them but I don't have time to stay online . ..

http://www.shsna.com/html/insurance/insurance_info.htm

http://www.proteinintolerantchildren.org/neocoverage.html

~Liz

Edited by lovemysophia on 27 January 2005 at 12:49pm

__________________
Proud Mamma to the Queen Bee Sophia 3-8-04 - diagnosed at 6 weeks with reflux . . . on Zantac for 4 1/2 mos and now on Prevacid (15 mgs daily)

Janice
Senior Member

Joined: 13 September 2004
Location: United States
Online Status: Offline
Posts: 531

Posted: 27 January 2005 at 2:41pm \| IP Logged	Janice">

Ok well I am going to post my letter that I used as our personal letter, it is the rough draft of it, the final is at my work on a disk. This is based upon the same letter that Tracy wrote to her insurance company and I can not thank her enough for letting me use it. May be by posting it here, some one else can use it.

If anyone has questions for me regarding this, you can always email me at cantrellcat@charter.net

To Whom It May Concern:

     This is an appeal to the verbal denial I received over the phone and I have since recieved an offical denial letter from you company. I spoke with Brandon in your customer service

department on January 5, 2005 concerning our insurance policy and whether or not it covers my daughter Samantha's medical food, Neocate. Brandon explained to me that our policy

has a direct exclusion concerning food supplements.

     I am writing to explain that Samantha has an unknown medical condition that causes her to have extreme diarrhea with marked blood loss, and dehydration requiring hospitilization,

and has not been able to tolerate any formula or food other than Neocate. She has been drinking Neocate Infant Formula after every formula trial she has been on failed. She was

breastfed, then she was on Enfamil AR, Nutramagin, and Alimentum before being changed to Neocate. After beginning Neocate, her digestive system settled down and she began to

have normal bowel movements. This is why Neocate is her sole source of nutrition at this time. Her Gastroenterologist would like Samantha to be on a diet of Neocate to give his

digestive and immune system time to mature, and calm down, thus enabling Samantha to eventually tolerate food.

   Neocate formula is unique in that it is the only formula available in The United States that is not plant or animal protein based. Neocate Infant formula is an amino acid based nutritionally

complete elemental formula. It is specifically designed to meet the nutritional needs of children age up to one year who are unable to digest a normal diet or other hypoallergenic products.

Neocate is formulated with 100% free amino acids. It is milk free, gluten free, and soy protein free. It provides complete nutrition, and is Samantha’s sole source of nutrition.

     Neocate formula is classified as an “over the counter” formula, however the label clearly states it is “to be used under the direction of a physician”, and is “not for parental use.”

Neocate is not a drug, but is classified by the FDA as a “medical food”, which requires usage under strict medical supervision. It cannot be obtained without a prescription from a doctor.

     Without this formula, my child will end up back in the Children’s Hospital and possibly require GI tube feeding. There is no other formula made that is not protein based. My daughter's

health and well being depends on his ability to receive Neocate formula as his sole source of nutrition.

    We are appealing to you in the hopes that you can and will approve this request for insurance coverage of Neocate Infant formula. This would make a significant positive impact on

Samantha’s health.

Thank you for your time and efforts in considering this appeal.

Sincerely,

   Christopher and Janice Gable

By the way, we got our reimbursement check yesterday, it was for $7,500. All this fight DOES pay off, DO NOT LET THEM WEAR YOU DOWN! If you keep fighting, you will win.

Edited by Janice on 27 January 2005 at 2:43pm

__________________
Janice
Samantha 6-25-04GERD/MSPI,Neocate
Lance 7-98 27wk ex-preemie,reflux
http://www.babiesonline.com/babies/s/samanthalauren/

Janice's Profile" align="absmiddle"> Search for other posts by <b style=

Janice" align="absmiddle">

Janice
Senior Member

Joined: 13 September 2004
Location: United States
Online Status: Offline
Posts: 531

Posted: 27 January 2005 at 10:36pm \| IP Logged	Janice">

Janice wrote:

I told the main switchboard that I was a family member of hers and that i miss placed the fax # and I needed to get something to her ASAP. Something about flowers for our mom's birthday or something. I was really convincing, it was great!

I can hang with the best of em, if need be.

This is how i got the fax # (hehehe) If they had only known, they would have hung up on me.

__________________
Janice
Samantha 6-25-04GERD/MSPI,Neocate
Lance 7-98 27wk ex-preemie,reflux
http://www.babiesonline.com/babies/s/samanthalauren/

Janice's Profile" align="absmiddle"> Search for other posts by <b style=

Janice" align="absmiddle">

Lauren
Senior Member

Joined: 15 September 2004
Location: United States
Online Status: Offline
Posts: 239

Posted: 27 January 2005 at 11:14pm \| IP Logged

Hi Janice,

CONGRATS!! Again!! Quick question...how did you get reimbursed? Did you need to send receipts in? Just wondering. And, getting my hopes up!!

__________________
Lauren
Emma - GERD/MSPI/ASD/EnlargedKidney/Dev Delay/?Metabolic Disorder? On: Neocate, Gantris, Levsin, Prevacid 15mg, Bethanacol
Madison, Sweet Big Sis! PFAPA/?IBD?; Miralax

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

IP Logged

Abby's Mom
Groupie
Groupie

Joined: 06 April 2006
Location: United States
Online Status: Offline
Posts: 657

Posted: 16 June 2006 at 7:59pm

Laura requested that I post the rest of this message in this forum so here it is. I will post the new info in a new message:

Original Post:

Last week, when my daughter was put on Alimentum and I saw how expensive it was, my pediatricians nurse referred me to an organization in South Dakota called Children's Special Health Services. It is through our state Department of Health. I just got off the phone with one of their personnel and she said that we could get up to $500.00 from the Children's Miracle Network to help pay for formula - I thought surely there must be a hitch. I asked if it was income based and she said no, as long as a child meets the health requirement (and reflux is one), assistance can be provided. She said she will fax over the application, have my doctor sign it, and she will send it in for me. Just doing a little figuring, that is about 80 days worth of formula which would be really cool. They will either issue the check directly to me or to the store that I prefer to buy the formula. It sounds really good. I will post again to keep everyone updated on how it works and try to do a little research on the availablity of the program in other areas.

Robin

Mom to Kayla (1/11/02)past refluxer & Abby (2/2/06)-med free!!!!

IP Logged

Abby's Mom
Groupie
Groupie

Joined: 06 April 2006
Location: United States
Online Status: Offline
Posts: 657

Posted: 16 June 2006 at 8:13pm

Children's Miracle Network (CMN) Info:

Today, I received a check in the mail for $500.00 to help pay for a 3 month supply of Alimentum. See previous post for history. I have enclosed highlights from the letter I received with the check which came from CMN out of Sioux Falls, SD.

Please find the enclosed Direct Child Family Assistance payment from CMN to assist you with the following items: $500.00 assistance with 3 months of Alimentum formula for Abigail. Mom and Dad will present this check to Target for assistance.

CMN is a non-profit organization dedicated to helping children by raising funds and awareness for children's hospitals across North America. Each year these 170 non-profit hospitals care for millions of children. They are there 24 hours a day to help kids of every age and background to overcome every imaginable diagnosis.

Sioux Valley Childrens Hospital joined CMN's alliance of premiere children's hospitals in 1986, making it the exclusive CMN hospital in our region.; Currently this region consists of eastern SD, SW Minnesota, northwest Iowa and northern Nebraska.

One of our goals is to continue to educate and insire each one of you with updated information regarding our organization. Every child is unique, every diagnosis different, and every situation special. As a CMN hospital, Sioux Valley Children's stands dedicated to this ideal by providing premier medical assistance to ALL children. Though medical technology has changed dramatically over the past 20 years, CMN has not altered it's core principle: to keep 100 percent of donations in the area in which they were raised.

Our Direct Child Family Assistance Program allows us to help families like yours with meals, mileage, lodging, un-reimbursed medical bills, specific medical equipment, and camperships for kids with medical conditions. We are privileged to have been able to provide you with assistance. Please contact us ifyou have any further questions or additional needs. References are also on file to help you reach out to other organizations as well.

Sorry the letter was so long but I wanted you all to read about it. I guess I would contact your local CMN hospital (check out the CMN webiste) and see if they offer the program.

Less than 1 week of waiting and I have enough to cover the Alimentum formula for 3 months, actually 6 months because we would have had to buy regular formula anyway. And all it took was signing a form. Please post if you have any success with the program.

Anyone in the above mentioned area, if you would like the direct contact number for the people who sent the letter, please email me at Robin.Jensen@presentation.edu.

Good luck!!

Mom to Kayla (1/11/02)past refluxer & Abby (2/2/06)-med free!!!!

IP Logged

hellbennt
Admin Group

Joined: 28 August 2003
Location: United States
Online Status: Offline
Posts: 13402

Posted: 27 June 2006 at 1:32pm

Melissa went to the TOP!!

Great News: She writes how she went to the top to get her son's Prevacid covered!

http://www.infantreflux.org/forum/forum_posts.asp?TID=5718

and here's her letter to the Insurance company: http://www.infantreflux.org/forum/forum_posts.asp?TID=5903

(please reply to the individual posts, unless of course it's something to help others Go To the Top!)

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

IP Logged

Momma2Gracie
Newbie
Newbie

Joined: 27 June 2006
Location: United States
Online Status: Offline
Posts: 33

Posted: 30 June 2006 at 8:50pm

The correct number for Apria is 1888-334-7978. This is their nutrition division. I contacted them and they contacted my insurance company and got approval. My doctor just has to fax them a prescription for Neocate. Apria's fax number is 1-800-693-7322.

Melissa - Mommy to Gracie - 3/02/06 - Reflux Free! and Mommy to Sydney - 12-19-07 - Silent Reflux - Zegerid 24mg (given 3Xs daily) and Neocate formula(trying to get insurance approval).

IP Logged

Miscellaneous
InfantReflux.Org Forums : Infant Reflux Information : Miscellaneous

Topic: Going to the TOP!!
	Page of 2 Next >>