The Vest

[julie]

Anonymous, my husband and I just moved from California. I am the active duty Navy person in our family, my husband has CF.

Can I ask you where your child is seen for CF care (is it Balboa) and which doctor he sees?

Dr. Stafford in Pulmonary was my husband CF doctor and got us the vest, but Dr. Stafford also worked closely with the pediatric pulmonary doctor (CF doctor) at balboa because Mark was his first patient. Maybe talk to Dr. Stafford about it, or if your child is having the CF care somewhere else, consider a visit to Balboa.

Email me if you like, division902@hotmail.com

 

[anonymous]

Julie,

We live in northern CA. My huband is in the AF stationed at Travis AFB. We started out getting our son's CF care at UC Davis but were not happy with them at all. We switched to Stanford in Palo Alto. We had heard great things about them and we are very happy with them. My son's dr is Dr. Moss, the director of the program. He actually saw a different dr when he went to clinic last and thats when the RX for the vest was written. He has his next visit in April so I will be talking with him and RT about what they can do or say to help get authorization.

Nicole

 

[anonymous]

Jen--

We do not have a case worker. At our last base we were told that we didn't need one and we didn't persue at any further beacuse we knew we would be moving. Maybe I should check into it, thanks!

Nicole

 

[anonymous]

I searched and see Vest systems listed on ebay. under 4k. Maybe an option.

 

[anonymous]

Just a quick update--Hill-Rom called me today and said that even though we were denied authorization for the vest they are going to send one out anyway. Thay are shipping it out tomorrow and we should have it within a week. They said that they think we will have a better appeal case if he's already using the vest. We can try it out and see if he even likes it. I have heard nothing except good things about Hill-Rom and now I have to agree!

Nicole

 

[anonymous]

We received Danny's vest about 2 weeks ago and he has been using it ever since. He really likes it. I was not too sure how he would act when the trainer came to show us how to use it but he just laughed. He likes that he can still play (he tried to color yesterday--try to stay in the lines!) and he likes to hear how his voice sounds. Once in awhile he will ask one of us to hold him while he does it but he has done better than I thought he would. Of course, it has been nice for us too! We are still gathering all of our info for the appeal. I really hope that they will give us authorization and we can keep the vest.

Nicole

 

[julie]

Good luck with the appeal Nicole! Just so you know, I saw it mentioned before that you didn't want to do the trial because Tricare said you couldn't have it in the house beforehand. Just an FYI (I'm sure you know by now) that they can't do that. If the Comapny offers a free trial, the insurance company has NO say in the matter.

I'm really ticked off by this, at Tricare. They deny things all the time. We are in appeal #8, hearing #1 to get Boost shakes covered for my husband. Going on 2 years now <img src="i/expressions/face-icon-small-smile.gif" border="0">. They think we're going to give up... haha think again. I'm the most hard headed determined person they'll ever meet.

Keep up with the info you are gathering for the appeal, and if you need any help, email me (division902@hotmail.com).

Can I ask, why again did they deny the preauthorization?


-From another military family.....

 

[anonymous]

Julie--

Tricare denied the auth because the medical director who was reviewing the claim felt that Danny was "too young and that manual CPT was working fine for him." He has never cultured anything and no hospital stays other than the long initial stay for the meconium ileus and ostomy take-down. Basically I felt that they were asking him to get worse before they would authorize the vest. Of course that doesn't sit well with us and we are determined to take this as far as it needs to go. We have had many troubles with Tricare not wanting to cover different things, not necessarily CF stuff. Thanks for offering to help and congratulations on your babies!

Nicole

 

[julie]

Sometimes I wonder what what end tricare has their head coming out of. I tell you.

They denied Mark's boost shakes because, "nutritional supplementation is NOT the standard of care for someone with CF" according to some pulmonologist who was hired by tricare to review the denial when we appealed it. Um... excuese me, WHERE did you get your CF training, I don't see it anywhere on your credentials? Also, NOT THE STANDARD OF CARE..... Um, here are 285 articles about CF that say it is, start reading buddy-oh, and these are just from 2005, let me get you 04, 03, 02 and so on.

When you say medical director, are you speaking of someone at Tricare, or someone at the clinic/military hospital?

Have you been able to obtain any of the studies done by Hillrom. I know there was another new one going on last year in Jan/Feb (05)? That might greatly help your case. Statistics are just statistics, but they could play an important part in this particular case. They compared manual clearance side by side with vest clearance, relating that to FEV1's, lung capacity and last but not least-lung infections. It might be just what you need for this case.

Good for you to fight them on this. I hate to see when families give up and just let them win. Your husband serves and one of his benefits is this coverage. Sure, as you said, maybe you could afford it because of his rank (We sure couldn't though, I just barely made E4 <img src="i/expressions/face-icon-small-smile.gif" border="0">) But he works his butt off for these benefits.

Keep us/me posted. I'd love to hear the outcome.

Thanks for the congrats, they are growing and sucking the life out of me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Julie--

The medical director I was talking about is with Tricare or more specifically Triwest. The authorization request went to him automatically because of the cost of the vest. Wouldn't be surprised it it was some dr who lost his license and is stuck working insurance. Another thing is, if my husband deployes, which is likely, if something would happen to me (hurt my hand, break my arm, whatever) they would have to send him home. Is that really practical? We have no family members nearby and no one else could do CPT for him. He would never tolerate CPT from anyone else.

I aksed Hill-Rom if they had any studies that show that the vest is better than manual CPT and they told me that all they have says its about the same. I'll have to look into that some more.WE have to have our appeal in by early June. All they want from us is a letter written by us, a letter from his pulm, and for us to sign a medical records release so they can get whatever records they might need. They will also ask for a pulm to review this and not just a regular dr. Seems like that should be done automatically, oh the joys of Tricare! I am just so fed up with military docs, hospitals, clinics. I constantly have to check up on them to make sure they are doing their job right.

A woman on Healhboards said that Tricare covers her daughters Pediasure. Just gets a RX from her PCM. Don't know why they are fighting you so hard on covering your husbands. Good luck with your hearing!

Wait till your babies are born--then they really suck the life out of you!!!!

Nicole

 

[anonymous]

Update---

A gentleman from TriWest called me yesterday and they approved the authorization for Danny's vest!!! Yeah!!! It is 100% covered. We are so glad we don't have to go any further in the appeal process.

Nicole

 

[julie]

That's GREAT Nicole, I'm so happy for you!!

 

[JazzysMom]

Good News Nicole!

 

[anonymous]

Hi...I am relatively new to the forum...I am more a "reader" than a "poster...: )...but I am not new to CF...I am the mother to an amazing 11 year old daughter who has been diagnosed since she was 13 months old...like many of you that have been posting on the Vest...and on Tri-Care...we are a military family too...we were initially denied by Tri-Care...and we were denied based on the Vest being experimental...I did learn that other regions had gotten approval...unfortunately...this was during a PCS...and frankly...I let the matter drop until we got settled into our new assignment...we reapplied...and we were approved...honestly...we were told it had all to do with our region...go figure...second...as far as nutritional supplements go...I have tried for PediaSure reimbursement...Doctor script and all...and was told that unless this was my child's only source of nutrition...Tri-Care would not pay...for many years...my daughter's diet has been supplemented by PediaSure (usually 4 cans/day)...talk about an expense...but an expense that I feel has been very worthwhile...I felt like this was the time to say hello and thank you to all...I have been learning so much...

Dina
Mom to Amanda (11 w/CF)

 

[julie]

Dina,

Our nutritional claim has been going on for almost 3 years (or somewhere around that time frame, so long, I've lost track...) but we just submitted our closing arguement via writing to the Federal Judge who is hearing the case. The attorneys for Tricare have until August to submit their closing statement to the federal judge and then he will make a recommendation to tricare as to what they should do by the end of October.

Our closing arguement was 4 pages I wrote with 76 pages of attachments to include a notarized letter from my husbands mom regarding his use of nutritional supplements and digestive problems from birth, a letter from his current CF nurse, a letter from his current CF dietician, a letter from my aunt who is also an RD but isn't involved in Mark's treatment so she has a little more leway to "talk in our favor" (I guess you could say), a letter from his previous CF dietician in San Diego AND (you are NOT going to believe this), the MOST wonderful letter written for US by someone at the CF foundation with some supporting documents/attachments to their letter and other studies, and reports and publications regarding CF and supplement use in cases of severe digestive problems that I have been gathering.

I feel good about our position in the case, but of course Tricare will probably deny it again. And you know what... screw um!!!! I'll file another hearing and appeal again. If we do win this case, I'd be happy to pass on the documentation we used if you are interested in fighting too. See the thing is, if they approve this for us, it sets a presedence for all others with CF and digestive problems.
Let me know, save my email address somewhere if need be. division902@hotmail.com. THis goes for anyone else with Tricare who is fighting this supplement battle. If we win (and believe me I'll post it <img src="i/expressions/face-icon-small-smile.gif" border="0">) and you want the info, I'll send it to you!

 

[anonymous]

Thanks Julie...I really hope that you are successful...this would be a huge help to so many...I try to take the good with the bad...and I know how fortunate we are to even have insurance...we have mostly been seen by civilian Pulmonologists...and other than prescription co-pays...our out of pocket has been minimal...except for the Pediasure...when I think about how much we have spent over the last 10 years...about $24,000...ouch...hopefully, you won't need any more documentation...but in the off chance that you have to appeal...my daughter participated in a nutrition study at the University of Florida at Shands under Dr. Alexandra Quittner back in 1999...this was an NIH sponsored study and it was very thorough and involved...and there may be some really relevant information from that study to support Mark's request. Thanks again for all of your great information...and hard work...you are paving the way for so many...: )

Dina-Mom to Amanda 11 w/CF