Re: CoQ10/Medicaid / Shayna---orphan drug

[Guest guest]

My military insurance (Tricare) has in their handbook that they pay for any drug

that has orphan drug status which Qgel does. I believe that 1 other companies

Q10 also has orphan drug status. There is a list somewhere on the web that

lists all orphan drugs.

Anyway, I still had to get permission on an appeal for them to pay for mine

because it was designated as an orphan drug but does not have marketing approval

date yet. I found last week where I actually emailed Raj the head of Tischcon

Corp that makes it and asked him when they would be completing there human

trials. His reply was that he was unsure as it takes alot of money. This was

an email from I think 2003. I do not know what the status of the human trials

is now.

Other insurances may pay for orphan drugs also. They paid me for 75% of my cost

in the latest settlement. Prescription drugs are paid at $9 per 30 day supply

but they did the general copay I think because I wrote a letter with the

recommended dosages of 5-10 per kilo of body weight and said my son and I do not

take that much because of the cost. So when their perscription division sent

the request back to the congrressman's office as unpaid they felt they had

better due something since they had just been awarded the contract to process

the tricare claims for the north last year.

Janet Sample

CoQ10/Medicaid / Shayna

Shayna,

What state do you live in? I know that in some states Medicaid does pay for

supplements including CoQ10.

I know that there were some people in Massachusetts that were working on

getting MA. Medicaid to pay for the CoQ10. Although I am not sure if they

succeeded or not. Does anyone who lives in MA. know if their Medicaid program

pays for CoQ10?

I believe it was Donna and Rod Thorell from MA. that were working on this

proposal. Hey Donna are you out there? Can you give us some information on this?

I would think that if you have a diagnosis that uses CoQ10 for a treatment

that Medicaid would pay for it. But I doubt they would pay for the Tishcon/Epic

brand. Most likely only OTC (over the counter) type.

Good Luck and let us know how you make out!!

Hugs,

Ann-Marie

Shayna wrote:

p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

[Guest guest]

Janet,

Very interesting. Do you know if it is only the Qgel form of CoQ10 that has

orphan drug status? Do you or anyone else know if Medicare, Medicaid or any

other private health insurance plans consider or accept it as orphan drug status

and therefore are willing to cover it?

I've emailed Raj at Tishcon to ask about discount but haven't heard back yet.

Phone messages were not returned either.

Thinking of going with Puritan's Pride CoQ10 (now on sale) because of the much

cheaper price, unless I can find out if the Qgel form can be covered or I can be

convinced that I simply won't get the same benefit from the less expensive

CoQ10.

Randall

CoQ10/Medicaid / Shayna

Shayna,

What state do you live in? I know that in some states Medicaid does pay for

supplements including CoQ10.

I know that there were some people in Massachusetts that were working on

getting MA. Medicaid to pay for the CoQ10. Although I am not sure if they

succeeded or not. Does anyone who lives in MA. know if their Medicaid program

pays for CoQ10?

I believe it was Donna and Rod Thorell from MA. that were working on this

proposal. Hey Donna are you out there? Can you give us some information on this?

I would think that if you have a diagnosis that uses CoQ10 for a treatment

that Medicaid would pay for it. But I doubt they would pay for the Tishcon/Epic

brand. Most likely only OTC (over the counter) type.

Good Luck and let us know how you make out!!

Hugs,

Ann-Marie

Shayna wrote:

p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

[Guest guest]

Randall

As far as I know, Tishcon Q-gel is the only one with orphan drug status.

My Blue Cross covers a percentage as they would durable medical

supplies such as glucose strips and lancets. It took several pieces of

information from legit sources and a letter from Dr. Shoffner for

approval, but has been great. I have to pay for it first and send in

the bill and I will loose this coverage when I retire.

Raj is more than likely at the UMDF conference in Atlanta. You

probably won't hear from him until he returns. He is often gone, so I

call the Tishcon number and punch in the number for sales. I often get

an answering machine, but always calls me back. He might also

be in Atlanta.

Some people have had gone results with other CoQ10, but I have not. I

still have to take a lot, but since my neuro feels that mito folks

should be taking 1200 mg. (I take less than 1000), he feels it is a

good level. This recommendation is based on research with Parkinson's

patients. This is the level at which they saw improvement.

laurie

>

>

>

>

>

>

> Janet,

>

> Very interesting. Do you know if it is only the Qgel form of CoQ10 that has

> orphan drug status? Do you or anyone else know if Medicare, Medicaid or any

> other private health insurance plans consider or accept it as orphan drug

> status and therefore are willing to cover it?

>

> I've emailed Raj at Tishcon to ask about discount but haven't heard back

> yet. Phone messages were not returned either.

>

> Thinking of going with Puritan's Pride CoQ10 (now on sale) because of the

> much cheaper price, unless I can find out if the Qgel form can be covered or

> I can be convinced that I simply won't get the same benefit from the less

> expensive CoQ10.

>

> Randall

>

>

> CoQ10/Medicaid / Shayna

>

> Shayna,

>

> What state do you live in? I know that in some states Medicaid does pay for

> supplements including CoQ10.

>

> I know that there were some people in Massachusetts that were working on

> getting MA. Medicaid to pay for the CoQ10. Although I am not sure if they

> succeeded or not. Does anyone who lives in MA. know if their Medicaid

> program pays for CoQ10?

>

> I believe it was Donna and Rod Thorell from MA. that were working on this

> proposal. Hey Donna are you out there? Can you give us some information on

> this?

>

> I would think that if you have a diagnosis that uses CoQ10 for a treatment

> that Medicaid would pay for it. But I doubt they would pay for the

> Tishcon/Epic brand. Most likely only OTC (over the counter) type.

>

> Good Luck and let us know how you make out!!

>

> Hugs,

> Ann-Marie

>

> Shayna wrote:

> p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

> agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

>

>

[Guest guest]

--- Randall Bosin ranbo1@...> wrote:

> Janet,

>

> Very interesting. Do you know if it is only the

> Qgel form of CoQ10 that has orphan drug status? Do

> you or anyone else know if Medicare, Medicaid or any

> other private health insurance plans consider or

> accept it as orphan drug status and therefore are

> willing to cover it?

It varies by state and by program whether CoQ10 is

covered. In IL they only pay for the cheapest brand

available. They also only pay for one family's CoQ10

because they have a particular medicaid waiver. They

don't pay for it under other medicaid programs.

With the UMDF conference just ended you'll probably

have better luck getting in touch with the guy from

Tishon. I'm sure he's very busy in the weeks leading

up to the conference. Even with the discount, though,

it's cheaper to use other brands of CoQ10. There is a

lot of debate by mito docs whether or not it pays to

use the expensive stuff.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Laurie,

I called my insurance (GEHA) to see if they might cover CoQ10. They said they

do not cover it or any over the counter supplements. I asked about orphan drug

status and a Medco (their prescription management company) pharmacist looked it

up and found CoQ10 to have orphan status only for Huntington's disease. They

also said even if it had orphan status for my condition (in this case, Mito) it

probably wouldn't be covered. But can you or anyone else explain what orphan

drug status means, especially in relation to possible insurance coverage? Can

something (like CoQ10) be both available over the counter without an

prescription and considered an " orphan drug " ? What does giving a prescription

drug or an over-the-counter supplement orphan drug status mean in practical

terms?

I'm also still looking into whether the Medicare Rx plan would ever cover

something like CoQ10; have to write my Congressman a letter, but need to be

clear about the facts first. If anyone has looked into this, I'd like to hear

what you found out.

Also, I wonder why only one brand (Tishcon's) of CoQ10 would have orphan drug

status.

Thanks,

Randall

CoQ10/Medicaid / Shayna

>

> Shayna,

>

> What state do you live in? I know that in some states Medicaid does pay for

> supplements including CoQ10.

>

> I know that there were some people in Massachusetts that were working on

> getting MA. Medicaid to pay for the CoQ10. Although I am not sure if they

> succeeded or not. Does anyone who lives in MA. know if their Medicaid

> program pays for CoQ10?

>

> I believe it was Donna and Rod Thorell from MA. that were working on this

> proposal. Hey Donna are you out there? Can you give us some information on

> this?

>

> I would think that if you have a diagnosis that uses CoQ10 for a treatment

> that Medicaid would pay for it. But I doubt they would pay for the

> Tishcon/Epic brand. Most likely only OTC (over the counter) type.

>

> Good Luck and let us know how you make out!!

>

> Hugs,

> Ann-Marie

>

> Shayna wrote:

> p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

> agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

>

>

[Guest guest]

--- Randall Bosin ranbo1@...> wrote:

Also, I wonder why only one brand (Tishcon's) of

> CoQ10 would have orphan drug status.

>

Tishon's has orphan drug status for some disorders

because they have some research to back up their claim

that it's more bioavailable. There is great

controversy about this though. Even at the conference

last week a speaker refused to recommend one brand

over another.

I would think that it would be unlikely that you'd get

coverage from medicaid or medicare for your CoQ10.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Randall

Having orphan drug status means that the FDA recognizes it as having

the potential as a treatment for a rare disorder. It still isn't

considered a prescription drug. Several trials have to take place

before it can go from orphan drug status to getting FDA approval. This

is very expensive and takes several years.

It is my understanding that Tishcon applied for and got orphan drug

status based on the bio-availability of the Q-gel. If the money is

obtained for testing, it will not be tested on those with mito, as

effectiveness can't be measured due to the normal changes we

experience. I was told that it would most likely be tested on one or

more specific heart conditions. This was a few years ago, so I'm not

sure if the thinking is the same.

I do not get Q-gel partially covered by Blue Cross status because of

the orphan drug status or as a prescription. Blue Cross covered it in

other states for some with mito when I was diagnosed 9-10 years ago,

so documentation was provided of this, along with some papers written

by mito folks, to my insurance company. It would never have happened

had it not been for Dr. Shoffner's office. I also have a teacher's

union insurance office that approved it, not actually the Blue Cross

office. I submit the receipt to them and they issue a check to me.

I hope this helps!

laurie

>

>

>

>

>

>

> Laurie,

>

> I called my insurance (GEHA) to see if they might cover CoQ10. They said

> they do not cover it or any over the counter supplements. I asked about

> orphan drug status and a Medco (their prescription management company)

> pharmacist looked it up and found CoQ10 to have orphan status only for

> Huntington's disease. They also said even if it had orphan status for my

> condition (in this case, Mito) it probably wouldn't be covered. But can you

> or anyone else explain what orphan drug status means, especially in relation

> to possible insurance coverage? Can something (like CoQ10) be both available

> over the counter without an prescription and considered an " orphan drug " ?

> What does giving a prescription drug or an over-the-counter supplement

> orphan drug status mean in practical terms?

>

> I'm also still looking into whether the Medicare Rx plan would ever cover

> something like CoQ10; have to write my Congressman a letter, but need to be

> clear about the facts first. If anyone has looked into this, I'd like to

> hear what you found out.

>

> Also, I wonder why only one brand (Tishcon's) of CoQ10 would have orphan

> drug status.

>

> Thanks,

>

> Randall

>

>

> CoQ10/Medicaid / Shayna

> >

> > Shayna,

> >

> > What state do you live in? I know that in some states Medicaid does pay

> for

> > supplements including CoQ10.

> >

> > I know that there were some people in Massachusetts that were working on

> > getting MA. Medicaid to pay for the CoQ10. Although I am not sure if they

> > succeeded or not. Does anyone who lives in MA. know if their Medicaid

> > program pays for CoQ10?

> >

> > I believe it was Donna and Rod Thorell from MA. that were working on this

> > proposal. Hey Donna are you out there? Can you give us some information

> on

> > this?

> >

> > I would think that if you have a diagnosis that uses CoQ10 for a

> treatment

> > that Medicaid would pay for it. But I doubt they would pay for the

> > Tishcon/Epic brand. Most likely only OTC (over the counter) type.

> >

> > Good Luck and let us know how you make out!!

> >

> > Hugs,

> > Ann-Marie

> >

> > Shayna wrote:

> > p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

> > agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

> >

> >