Re: Problems getting Carnitor

[Guest guest]

Kass,

I understand completely your frustrations with Cigna. I went through

the same process two years ago with them. My dx is Primary Carnitine

Deficiency, and despite letters from my docs indicating that Carnitor

was a medical necessity, and that I would likely die without it,

Cigna steadfastly refused to cover it. I appealed the decision three

times and it went to full medical review. Cigna acknowledged that it

was medically necessary, but still refused to cover it. The

insurance commission was no help. Neither was Sigma Tau, as I didn't

qualify for their assistance program. My employer also didn't go to

bat for me, although they wanted to be advised of the appeals at

every step. Eventually, this information was used against me, and I

was fired from my job.

In the end, I paid $350/month out of pocket for Carnitor, and was

able to switch to another medical insurer after about a year.

The lesson I learned was that I'm on my own here to fight for

survival.

Theresa

> Hi All :-)

>

> I've not posted in quite some time but have been reading and trying

to

> keep up with everyone. Thoughts and prayers are always going up

for you

> all.

>

> I wanted to share whats happening here as an FYI and some

information a

> lady at Sigma-Tau shared with me today during a phone conversation

in

> case its helpful to someone here.

>

> Prior to May of this last year, we've never had any real problems

> getting the kids Carnitor script filled. I recall early on in them

> taking it one of the insurance companies only wanting to cover the

> liquid form (my guys have taken it in the pill form almost from the

> beginning), but we were able to get the pill form eventually and

have

> otherwise had no issues. In May of this last year, we changed

insurance

> carriers to Cigna PPO and immediatly we're told by the pharmacy that

> they were refusing to pay for the kids Carnitor. Between the three

of

> them, they take 4950mgs per day and this would have cost me $425.00

out

> of pocket every month.

>

> We contacted our ped, who contacted Cigna and was told to send a

letter

> of medical necessity, which he did. They again said no, saying it

was a

> " dietary supplement " and not something they would cover. The peds

> attempts to speak with someone making the decision on this were

thwarted

> when they called him and said there was no point in him speaking to

> someone in medical review because it was not a matter of medical

need,

> but that they simply will not cover it.

>

> We then got our case manager involved, who requested a letter from

Dr.

> Whiteman and recieved it. She was able to get the medical side of

our

> insurance to agree to cover it for 6 months, but only if we paid it

up

> front and then waited for them to reimburse us. With our

prescription

> co-pays already running $400 a month, plus another $150 for their

CoQ10,

> B2, etc., there was just no way we could afford another $425 per

month

> for this one med, even if they reimbursed us in a timely manner.

The

> prescription side of our insurance continued to deny coverage even

with

> the letter from Dr. Whiteman.

>

> All the kids doctors are infuriated, but what more we can do is

> unknown. They are simply saying that regardless of medical

necessity

> they have the right to refuse to cover any drug they don't want

to. How

> frightening is that!!??

>

> Thankfully, there is a Carnitor Drug Assistance program that we

should

> be able to get help from at the end of the 6 month term the medical

side

> of Cigna has agreed to cover it. In the meantime though, the kids

have

> been off Carnitor now since June and there are a number of things

going

> on that could well be due to them not getting it, though its all a

> little hard to prove. We'll have access to this soon, so atleast

there

> is some light at the end of the tunnel.

>

> As a last ditch effort though, I contacted Sigma-Tau to see if they

> might have some ideas on how we might get the kids Carnitor

covered. As

> much as I would like this to happen for us, I've learned over the

years

> that when one insurance company manages to not have to pay for some

need

> or service, other insurance companies often follow suit. The idea

that

> there would be others out there in my position, maybe a whole lot of

> others, is just very disconcerting to say the least. I wasn't sure

if

> they would have any ideas for me, but figured it was worth a try.

>

> A very nice lady from Sigma-Tau called me today. She said she knew

> which insurance company we were with even before she got to that

part in

> my email to them because Cigna is the ONLY insurance company

refusing to

> pay for Carnitor at this time. Sigma-Tau has now sent atleast ten

> letters to Cigna over the last year or so since this decision was

made,

> all to no avail, and they are just as frustrated as I am. It

appears

> that no amount of telling Cigna that this is an FDA approved drug

that

> is NOT a dietary supplement seems to work and Sigma-Tau is just as

> concerned as I am that if Cigna is allowed to continue to not cover

this

> drug, other insurance companies will follow suit.

>

> The only thing we can really do right now appears to be to have as

many

> letters as possible sent to Cigna from our doctors and myself.

She's

> also recommended I contact my government representatives and share

our

> story with them also to see if they might be able to help. In other

> words, we either strong arm them into covering it or its not going

to

> happen. Sadly, according to the state insurance commision, no

insurance

> company is required to cover any drug they don't want to and there

is

> nothing they can do about it either.

>

> Anyway.....the lady at Sigma-Tau shared one other tidbit with me

today

> that may be helpful to some of you. She mentioned that there is a

> generic now on the market and I told her I had heard this too. She

said

> that they had recieved a letter from another mom that was very

concerned

> about making the change her insurance company was forcing her to

make

> from Carnitor to the generic. Sigma-Tau called the insurance

company

> and they were able to work things out so that the mom was able to

get

> the Carnitor at the lower copay amount. She wanted me to share

with you

> all that if you were having the same issue, Sigma-Tau is willing to

help

> with the insurance companies in any way they can, just email or call

> them. Hope this is helpful to someone here!!

>

> Any prayers you might have to spare as we continue this fight I

> sincerely appreciate!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(11-Mito), Madison(8-Mito), and Abby(6-

Mito)

> " Life is not measured by the breaths we take, but by the moments

that

> take our breath away " Unknown

[Guest guest]

Hi Cass, I'm going through the same thing with my insurance, after a

1 1/2 of them allowing my scripts to be filled, they will no longer

cover Carnitor. But you do have an option, call the Law Disability

Project in your area they take these cases and they win. If you are

not eligable for their services because of income they will direct

you to someone who will take your case at lower cost than most

laywers. I know this is a hassle and who has time or energy but

these insurance companies have to learn we arent going to take this

crap. WE did not ask to become disabled nor did are children ask to

be born disabled. And this is a no-brainer for these lawyers

expecially since your children have already been Carnitor and been

payed for by your insurance. This is a harder task if this is a

script that is being filled for the 1st time, and they win those

cases too. Most of the time insurance companies here the word

Disability Law Project and they yeild, without a fight, so try it

please, ive been without my Carnitor for only a month and the

difference is horrible without it, im really suffering. I hope this

helps. Barb

[Guest guest]

What an outrage! I think it so foolish of the insurance company to think they save money by withholding medication coverage. Don't they know that without these meds THEY will end up paying further medical costs from the sicknesses that occur because the kids aren't getting the suppliments?! They aren't being very smart or very caring. They must be more about money making than caring for the people they are supposed to be helping! I am sorry to hear this Kass. I sure hope something happens so you are able to get those meds for the kids. 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)

>

>Reply-To: Mito

>To: "Mito " <Mito >

>Subject: Problems getting Carnitor

>Date: Wed, 05 Jan 2005 02:18:08 -0600

>

>Hi All :-)

>

>I've not posted in quite some time but have been reading and trying to

>keep up with everyone. Thoughts and prayers are always going up for you

>all.

>

>I wanted to share whats happening here as an FYI and some information a

>lady at Sigma-Tau shared with me today during a phone conversation in

>case its helpful to someone here.

>

>Prior to May of this last year, we've never had any real problems

>getting the kids Carnitor script filled. I recall early on in them

>taking it one of the insurance companies only wanting to cover the

>liquid form (my guys have taken it in the pill form almost from the

>beginning), but we were able to get the pill form eventually and have

>otherwise had no issues. In May of this last year, we changed insurance

>carriers to Cigna PPO and immediatly we're told by the pharmacy that

>they were refusing to pay for the kids Carnitor. Between the three of

>them, they take 4950mgs per day and this would have cost me $425.00 out

>of pocket every month.

>

>We contacted our ped, who contacted Cigna and was told to send a letter

>of medical necessity, which he did. They again said no, saying it was a

>"dietary supplement" and not something they would cover. The peds

>attempts to speak with someone making the decision on this were thwarted

>when they called him and said there was no point in him speaking to

>someone in medical review because it was not a matter of medical need,

>but that they simply will not cover it.

>

>We then got our case manager involved, who requested a letter from Dr.

>Whiteman and recieved it. She was able to get the medical side of our

>insurance to agree to cover it for 6 months, but only if we paid it up

>front and then waited for them to reimburse us. With our prescription

>co-pays already running $400 a month, plus another $150 for their CoQ10,

>B2, etc., there was just no way we could afford another $425 per month

>for this one med, even if they reimbursed us in a timely manner. The

>prescription side of our insurance continued to deny coverage even with

>the letter from Dr. Whiteman.

>

>All the kids doctors are infuriated, but what more we can do is

>unknown. They are simply saying that regardless of medical necessity

>they have the right to refuse to cover any drug they don't want to. How

>frightening is that!!??

>

>Thankfully, there is a Carnitor Drug Assistance program that we should

>be able to get help from at the end of the 6 month term the medical side

>of Cigna has agreed to cover it. In the meantime though, the kids have

>been off Carnitor now since June and there are a number of things going

>on that could well be due to them not getting it, though its all a

>little hard to prove. We'll have access to this soon, so atleast there

>is some light at the end of the tunnel.

>

>As a last ditch effort though, I contacted Sigma-Tau to see if they

>might have some ideas on how we might get the kids Carnitor covered. As

>much as I would like this to happen for us, I've learned over the years

>that when one insurance company manages to not have to pay for some need

>or service, other insurance companies often follow suit. The idea that

>there would be others out there in my position, maybe a whole lot of

>others, is just very disconcerting to say the least. I wasn't sure if

>they would have any ideas for me, but figured it was worth a try.

>

>A very nice lady from Sigma-Tau called me today. She said she knew

>which insurance company we were with even before she got to that part in

>my email to them because Cigna is the ONLY insurance company refusing to

>pay for Carnitor at this time. Sigma-Tau has now sent atleast ten

>letters to Cigna over the last year or so since this decision was made,

>all to no avail, and they are just as frustrated as I am. It appears

>that no amount of telling Cigna that this is an FDA approved drug that

>is NOT a dietary supplement seems to work and Sigma-Tau is just as

>concerned as I am that if Cigna is allowed to continue to not cover this

>drug, other insurance companies will follow suit.

>

>The only thing we can really do right now appears to be to have as many

>letters as possible sent to Cigna from our doctors and myself. She's

>also recommended I contact my government representatives and share our

>story with them also to see if they might be able to help. In other

>words, we either strong arm them into covering it or its not going to

>happen. Sadly, according to the state insurance commision, no insurance

>company is required to cover any drug they don't want to and there is

>nothing they can do about it either.

>

>Anyway.....the lady at Sigma-Tau shared one other tidbit with me today

>that may be helpful to some of you. She mentioned that there is a

>generic now on the market and I told her I had heard this too. She said

>that they had recieved a letter from another mom that was very concerned

>about making the change her insurance company was forcing her to make

>from Carnitor to the generic. Sigma-Tau called the insurance company

>and they were able to work things out so that the mom was able to get

>the Carnitor at the lower copay amount. She wanted me to share with you

>all that if you were having the same issue, Sigma-Tau is willing to help

>with the insurance companies in any way they can, just email or call

>them. Hope this is helpful to someone here!!

>

>Any prayers you might have to spare as we continue this fight I

>sincerely appreciate!!

>

>-- BIG hugs,

>Kass, proud mom to Chance(11-Mito), Madison(8-Mito), and Abby(6-Mito)

>"Life is not measured by the breaths we take, but by the moments that

>take our breath away" Unknown

[Guest guest]

Thanks SO much Barb.....I will definatly check into this!!! Tired

thinking about this fight, but its gotta be done!! THANKS!!

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(6-Mito)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

matts_mom96 wrote:

Hi Cass, I'm going through the same thing with

my insurance, after a

1 1/2 of them allowing my scripts to be filled, they will no longer

cover Carnitor. But you do have an option, call the Law Disability

Project in your area they take these cases and they win.

If you are

not eligable for their services because of income they will direct

you to someone who will take your case at lower cost than most

laywers. I know this is a hassle and who has time or energy

but

these insurance companies have to learn we arent going to take

this

crap. WE did not ask to become disabled nor did are children

ask to

be born disabled. And this is a no-brainer for these lawyers

expecially since your children have already been Carnitor and been

payed for by your insurance. This is a harder task if this

is a

script that is being filled for the 1st time, and they win those

cases too. Most of the time insurance companies here

the word

Disability Law Project and they yeild, without a fight, so try

it

please, ive been without my Carnitor for only a month and the

difference is horrible without it, im really suffering. I

hope this

helps. Barb