RSS and FDA question

[Guest guest]

GHT for RSS children was approved several years ago by the FDA. Before

that time it was hard to get approval by insurance - they said it was

" experimental " . Our insurance co. hasn't given us any trouble - other than

delaying

until the last minute.

Ellen - Mom and grandmom to Mikey - 9 yrs old, GHT for 6 years lupron for 3

months. 10th percentile now for weight and height.

[Guest guest]

Hi Again!

I have been trying to find insurance that will cover GH, and

there is another state funded ins. co. who will accept Dasia with 2

requirements; we get denied by another insurance co,(EASY!), and if

the use of GHT for RSS children is recognized by the FDA. Anyone

know the answer? I tried to find out from our Dr.'s office, and they

haven't gotten back to me. This gets so tricky because everyone

acknowledges growth hormone deficiency, and includes them in these

programs, yet our kids have the same symptom and treatment, and it

all comes down to the technicality of a name. Which, if everyone

denies us, I will fight tooth and nail like Sheldon! I'm sure you're

such an inspiration to so many! Everyone from the First Steps

program (PT, OT, and nutr) are all behind me, if I need support, and

there are also a total of 4 families, (possible 5th, I find out the

diagnosis Fri from Dasia's OT, about a boy who's in First Steps),

all in Indiana!! So hopefully if we all rally together we can get

something changed!! Hopefully get RSS added to the Children's

Special Health Care Needs list, since they have GHD on the list

already. I will know in 6-8 weeks, and if need be, we begin the

appeals process and fight!! Thanks everyone for being here!!

[Guest guest]

Ellen---That's great!! thank you for replying!!

ega077@... wrote:GHT for RSS children was approved several years ago by the

FDA. Before

that time it was hard to get approval by insurance - they said it was

" experimental " . Our insurance co. hasn't given us any trouble - other than

delaying

until the last minute.

Ellen - Mom and grandmom to Mikey - 9 yrs old, GHT for 6 years lupron for 3

months. 10th percentile now for weight and height.

[Guest guest]

Actually, growth hormone therapy was NOT approved for children with

RSS. It has been approved for children who were born small-for-

gestational-age and have not caught up in growth by age 2. Probably

95% of RSS children are born SGA, but want to make sure you know

that specific ruling.

Then a year ago or so, GHT was also approved by the FDA for children

with idiopathic short stature. However, that approval is very

stringent, and requires the child to be at specific growth rates,

etc. The FDA approval for children born SGA does not have those

specifics.

So.... make sure that when your doctor writes the letter for

battling for coverage, that he does it as a child with RSS/SGA.

Make sure to use the SGA. Also, if your doctor chooses a brand of

growth hormone, the pharmaceutical company usually has a

representative that would be assigned to you that can help battle

the insurance. I know that Dr. Harbison told us to NOT contact

insurance at all. She handled it completely, because she didn't

want us saying the wrong things.... She and the Eli Lilly rep

worked with Aetna to get the coverage.

Hope this info helps. Jenn

>

>

>

> Hi Again!

> I have been trying to find insurance that will cover GH, and

> there is another state funded ins. co. who will accept Dasia with

2

> requirements; we get denied by another insurance co,(EASY!), and

if

> the use of GHT for RSS children is recognized by the FDA. Anyone

> know the answer? I tried to find out from our Dr.'s office, and

they

> haven't gotten back to me. This gets so tricky because everyone

> acknowledges growth hormone deficiency, and includes them in these

> programs, yet our kids have the same symptom and treatment, and it

> all comes down to the technicality of a name. Which, if everyone

> denies us, I will fight tooth and nail like Sheldon! I'm sure

you're

> such an inspiration to so many! Everyone from the First Steps

> program (PT, OT, and nutr) are all behind me, if I need support,

and

> there are also a total of 4 families, (possible 5th, I find out

the

> diagnosis Fri from Dasia's OT, about a boy who's in First Steps),

> all in Indiana!! So hopefully if we all rally together we can get

> something changed!! Hopefully get RSS added to the Children's

> Special Health Care Needs list, since they have GHD on the list

> already. I will know in 6-8 weeks, and if need be, we begin the

> appeals process and fight!! Thanks everyone for being here!!

>

>

[Guest guest]

Jenn,

Thank you for that info about letting the doctors handle the insurance

companies. That makes perfect sense, I would certainly want that, I just

wouldn't have thought they would have any part in that. I'd like to go see Dr.

H., because I'm sure a letter from her would get me a spot in this program I'm

trying for. They have a list of diagnosis', and GHD is one, and I know she could

write a letter in a way that they would see that this really is not an entirely

different need. I was going to write a letter myself along with the one our

doctor is sending, but I'm afraid of saying the wrong thing. I wish there was a

standard RSS letter for insurance companies! That would be nice.

Thanks you for the info!!!

Brock wrote:

Actually, growth hormone therapy was NOT approved for children with

RSS. It has been approved for children who were born small-for-

gestational-age and have not caught up in growth by age 2. Probably

95% of RSS children are born SGA, but want to make sure you know

that specific ruling.

Then a year ago or so, GHT was also approved by the FDA for children

with idiopathic short stature. However, that approval is very

stringent, and requires the child to be at specific growth rates,

etc. The FDA approval for children born SGA does not have those

specifics.

So.... make sure that when your doctor writes the letter for

battling for coverage, that he does it as a child with RSS/SGA.

Make sure to use the SGA. Also, if your doctor chooses a brand of

growth hormone, the pharmaceutical company usually has a

representative that would be assigned to you that can help battle

the insurance. I know that Dr. Harbison told us to NOT contact

insurance at all. She handled it completely, because she didn't

want us saying the wrong things.... She and the Eli Lilly rep

worked with Aetna to get the coverage.

Hope this info helps. Jenn

>

>

>

> Hi Again!

> I have been trying to find insurance that will cover GH, and

> there is another state funded ins. co. who will accept Dasia with

2

> requirements; we get denied by another insurance co,(EASY!), and

if

> the use of GHT for RSS children is recognized by the FDA. Anyone

> know the answer? I tried to find out from our Dr.'s office, and

they

> haven't gotten back to me. This gets so tricky because everyone

> acknowledges growth hormone deficiency, and includes them in these

> programs, yet our kids have the same symptom and treatment, and it

> all comes down to the technicality of a name. Which, if everyone

> denies us, I will fight tooth and nail like Sheldon! I'm sure

you're

> such an inspiration to so many! Everyone from the First Steps

> program (PT, OT, and nutr) are all behind me, if I need support,

and

> there are also a total of 4 families, (possible 5th, I find out

the

> diagnosis Fri from Dasia's OT, about a boy who's in First Steps),

> all in Indiana!! So hopefully if we all rally together we can get

> something changed!! Hopefully get RSS added to the Children's

> Special Health Care Needs list, since they have GHD on the list

> already. I will know in 6-8 weeks, and if need be, we begin the

> appeals process and fight!! Thanks everyone for being here!!

>

>