Re: Can't afford to see Shoffner... now what?

[Guest guest]

We had been scheduled to go to Atlanta to see Dr. Shoffner, but oncethe insurance pre-cert was final we learned he is "out of network" andwill cost several thousand dollars for us to go through with thebiopsy there (which just isn't an option right now). Does anyone haveany advice? What are our other options? Who else does freshbiopsies? We checked to see if Dr. Cohen was in-network and he isnot. Mayo is not in network. Anyone else left?

Well I would imagine as with any out of town provider that they are going to be considered out of network. You have a couple of options...one would be to have the referring doc write a letter to the dr at the insurance company, and you would file an appeal with it...your doc needs to state that this testing is only done at two places in the country. They need to know that a Fresh biopsy is your best chance of them not having to do repeat biopsies and would save them money in the long run. Fresh bxs are only done in Cleavland and Atlanta and I think there might be someone in California doing them But if you want the best then go for fresh...you have to build a case that this is not available with any of the in-network docs, which it isn't! So that's one option...

another option would be to do a fundraiser for the rest. Shoffner did not accept medicaid which was all we had...we decided on February 16th that we were going and raised funds. By the first of March, we had all the money and went at the end of march. We sent out letters to anyone we could think of...along with an event flyer...we did a concert of dance and music...we have a lot of friends who are Christian artists. We also did a silent auction. That's raised about $4,500 and then we got about $5000 through a spontaneous one time offering at church and then the rest came fromt he letters I sent all over the country to friends. People really wanted to help...a local coffee shop even paid for our rental car while we were there!

one other thing comes to mind...email the group and ask for SuAnn Bube in the subject...she knows of an organization that helps families with different expenses that MDA doens't cover...like even funeral expenses...I used to have it bookmarked but I dont' anymore. Anyway, maybe they can help or know someone who can.

You can also call civic groups or churches and see if they can help. There's always a way, but its just hard figuring out hwo to get there!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/

[Guest guest]

We had been scheduled to go to Atlanta to see Dr. Shoffner, but oncethe insurance pre-cert was final we learned he is "out of network" andwill cost several thousand dollars for us to go through with thebiopsy there (which just isn't an option right now). Does anyone haveany advice? What are our other options? Who else does freshbiopsies? We checked to see if Dr. Cohen was in-network and he isnot. Mayo is not in network. Anyone else left?

Well I would imagine as with any out of town provider that they are going to be considered out of network. You have a couple of options...one would be to have the referring doc write a letter to the dr at the insurance company, and you would file an appeal with it...your doc needs to state that this testing is only done at two places in the country. They need to know that a Fresh biopsy is your best chance of them not having to do repeat biopsies and would save them money in the long run. Fresh bxs are only done in Cleavland and Atlanta and I think there might be someone in California doing them But if you want the best then go for fresh...you have to build a case that this is not available with any of the in-network docs, which it isn't! So that's one option...

another option would be to do a fundraiser for the rest. Shoffner did not accept medicaid which was all we had...we decided on February 16th that we were going and raised funds. By the first of March, we had all the money and went at the end of march. We sent out letters to anyone we could think of...along with an event flyer...we did a concert of dance and music...we have a lot of friends who are Christian artists. We also did a silent auction. That's raised about $4,500 and then we got about $5000 through a spontaneous one time offering at church and then the rest came fromt he letters I sent all over the country to friends. People really wanted to help...a local coffee shop even paid for our rental car while we were there!

one other thing comes to mind...email the group and ask for SuAnn Bube in the subject...she knows of an organization that helps families with different expenses that MDA doens't cover...like even funeral expenses...I used to have it bookmarked but I dont' anymore. Anyway, maybe they can help or know someone who can.

You can also call civic groups or churches and see if they can help. There's always a way, but its just hard figuring out hwo to get there!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/

[Guest guest]

,

The group Deb spoke of is the Muscular Dystrophy Family Foundation. I

don't know if that's something they cover, but it's worth a try.

http://www.mdff.org/

I have heard of some people getting help from MDA in paying for testing,

including a muscle biopsy. Our local chapter made an oral commitment to

pay for some genetic testing (of muscle tissue) for Emilie, though we've

not gotten the bill, so I can't tell you for sure how much they will pay.

mom to Emilie, 18, Complex IV

[Guest guest]

,

The group Deb spoke of is the Muscular Dystrophy Family Foundation. I

don't know if that's something they cover, but it's worth a try.

http://www.mdff.org/

I have heard of some people getting help from MDA in paying for testing,

including a muscle biopsy. Our local chapter made an oral commitment to

pay for some genetic testing (of muscle tissue) for Emilie, though we've

not gotten the bill, so I can't tell you for sure how much they will pay.

mom to Emilie, 18, Complex IV

[Guest guest]

,

Find out from them who is in network - if anyone. If they don't have

anyone in network they may be willing to write a single person

contract with him. Sometimes if they have no in network specialist

they have to pay the benefits as in network. Check with your HR

person to see if they can help you through this.

Twana

>

>he is " out of network "

[Guest guest]

,

Find out from them who is in network - if anyone. If they don't have

anyone in network they may be willing to write a single person

contract with him. Sometimes if they have no in network specialist

they have to pay the benefits as in network. Check with your HR

person to see if they can help you through this.

Twana

>

>he is " out of network "

[Guest guest]

We saw Dr. Shoffner and he wasn't in network but our

insurance got him covered as " in network " through

something called " gap coverage " because of the rarity

of these disorders and the fact that there are so few

specialists out there. You might want to see if your

insurance has anything comparable to that. Good luck!

--- wrote:

>

> We had been scheduled to go to Atlanta to see Dr.

> Shoffner, but once

> the insurance pre-cert was final we learned he is

> " out of network " and

> will cost several thousand dollars for us to go

> through with the

> biopsy there (which just isn't an option right now).

> Does anyone have

> any advice? What are our other options? Who else

> does fresh

> biopsies? We checked to see if Dr. Cohen was

> in-network and he is

> not. Mayo is not in network. Anyone else left?

>

> My son is 10 with suspected Mito(mild). He's doing

> a little better

> with fatigue/strength since starting Coq10 and

> Carnitor. He also has

> a severe immune disorder and is on IVIG (actually

> SCIG).

>

> Thanks in advance for any advice!

>

>

>

>

>

__________________________________________________

[Guest guest]

We saw Dr. Shoffner and he wasn't in network but our

insurance got him covered as " in network " through

something called " gap coverage " because of the rarity

of these disorders and the fact that there are so few

specialists out there. You might want to see if your

insurance has anything comparable to that. Good luck!

--- wrote:

>

> We had been scheduled to go to Atlanta to see Dr.

> Shoffner, but once

> the insurance pre-cert was final we learned he is

> " out of network " and

> will cost several thousand dollars for us to go

> through with the

> biopsy there (which just isn't an option right now).

> Does anyone have

> any advice? What are our other options? Who else

> does fresh

> biopsies? We checked to see if Dr. Cohen was

> in-network and he is

> not. Mayo is not in network. Anyone else left?

>

> My son is 10 with suspected Mito(mild). He's doing

> a little better

> with fatigue/strength since starting Coq10 and

> Carnitor. He also has

> a severe immune disorder and is on IVIG (actually

> SCIG).

>

> Thanks in advance for any advice!

>

>

>

>

>

__________________________________________________

[Guest guest]

Maybe you can try the MDA. They will do muscle biopsies (probally frozen though) and it is totally free. Dr.Cohen is actually trying to get more MDA doctors educated in Mito, to help because all the mito docs caseloads are so big. Mito is covered by MDA so all there services will be available to you, for free. We have had them help with Gracies cooling attire. Insurance would not cover it and she needed more than we could afford, at the time. MDA paid for it all! Best wishes

Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how!

[Guest guest]

Maybe you can try the MDA. They will do muscle biopsies (probally frozen though) and it is totally free. Dr.Cohen is actually trying to get more MDA doctors educated in Mito, to help because all the mito docs caseloads are so big. Mito is covered by MDA so all there services will be available to you, for free. We have had them help with Gracies cooling attire. Insurance would not cover it and she needed more than we could afford, at the time. MDA paid for it all! Best wishes

Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how!

[Guest guest]

Have your primary care doc and another specialist said that you need a fresh

muscle biopsy? Have you had a frozen one? I would think that your best bet

would be to get a couple of docs say that a fresh biopsy is necessary. If that

is

the case, insurance would have to provide it. There are only two places in the

US that do that--Cleveland and Atlanta. It's about impossible to get into Cohen

1+ year wait) and I would NOT recomment seeing the neuro fellow there

(yuck). You can also appeal to the insurance board for your state.

[Guest guest]

Have your primary care doc and another specialist said that you need a fresh

muscle biopsy? Have you had a frozen one? I would think that your best bet

would be to get a couple of docs say that a fresh biopsy is necessary. If that

is

the case, insurance would have to provide it. There are only two places in the

US that do that--Cleveland and Atlanta. It's about impossible to get into Cohen

1+ year wait) and I would NOT recomment seeing the neuro fellow there

(yuck). You can also appeal to the insurance board for your state.