Re: ? health insurance appeals

[Guest guest]

Has your metabolic doc written anything for you indicating that these

" supplements " are like meds for your child? Dr. Whiteman wrote a 40 some

page paper for our insurance and medicaid to get them covered. I think he

automatically keeps one of these papers handy so if he needs it it's already

there. You can't argue with concrete evidence from a doctor of the

importance of these supplements.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

? health insurance appeals

>

> Hi all,

>

> I've been going through the appeal process to try to get Asher's meds

> covered by our insurance. They refuse covering them b/c they say they are

> 'nutritional supplements' (i.e. C0Q10, carnitor, Vit C, B1, B2, E). We are

> at the " second level appeal " part and there is a meeting scheduled to

> review the second level appeal request - I am told that I can participate

> by conference call and I will do that. I am even tempted to hire a lawyer

> (I have a couple of neighbors that are lawyers and might help us) to

> participate in the conference call.

>

> Any ideas or suggestions about this step of appeal? It is wrong that b/c

> they've classified these items as 'nutritional supplements' that they deny

> them for our children. For kids with mito, they are medications and

> standard medical treatment. I'm fighting mad so I hope that helps to keep

> me going during the appeal.

>

> Any thoughts?

>

> Anne R

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hi there,

I had the same problem. Except for the Carnitor, that is a prescription

not a supplement

and they have to cover that if you have prescription coverage. I went

through 3 levels of

appeal and used the FDA guidelines about errors of inborn metabolism,

all kinds of doctors

notes and the terminal part of the disease.. anyway I could think of to

try to get them to cover the meds.

Tried to use the Tishcon orphan drug status on the Co-Q and really got

nowhere even with

the orphan drug status and an NDC number.

We were then told about a compounding pharmacy in land who would

compound all

of it along with the prescription Carnitor. They billed our insurance

under the name "Carnitine

Compound" and we have been getting it paid for ever since. All we pay

for is our small copay

and the shipping costs which really aren't that high. If your

insurance company pays for your

Carnitor, they really can't decline a compound with it in it. We get

the compound for Joe our

youngest in liquid form and mine they are making a capsule(I couldn't

take the taste of the liquid)

I hope you succeed in getting it paid for.

BTW... the Pharmacy is called The Village Green Pharmacy, they are in

Bethesda MD, have an 800

number and a website.

take care,

AnnMarie L. - Complex IV Married to my best friend Rick,

Mom of (15), (12), Cassandra (6) and

Joe (4 1/2) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)