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Hi Meg,

Thanks for responding. We were using a group that worked at Hackensack.

They are wonderful, but saddly they can't accept my insurance. There was a lot

of talk about becomming an official center. We visit Columbia once a year and

may need to consider going there for all regular visits. It really is a

difficult decision to make. Just when we were getting settled and getting

accustomed to everything. They say things happen for a reason, I just worry

about

making the wrong decision. And Channa loves her doc's and it is going to be so

hard on her. When I mentioned it to her she was heartbroken.

Pattie

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Pattie,

Where are you in NJ? I am in NY about 5 mins from the Woodbury Commons

and 15 from West Point. My kids go to the CF clinic in Columbia. I

heard Hackensack Medical has an excellent center. You might want to

look into that.

Meg

Mom of 3

2wcf

Quoting MUNCH313@...:

> Hi everyone,

>

> Just a quick question. Currently my daughter sees a Pulm. and

> Gastro. which

> are not associated with a CF Center. They diagnosed her and have

> given her

> excellent care. Just got word that they are not longer accepting my

> insurance.

> They suggest opting out of my policy and just use her medicaid

> through SSI.

> The red flag goes up for me on that. I think that would be a bad

> move. We

> attend Columbia in NY once a year for a " second opinion " so to speak.

> I am not

> ready to pick new doctors out of a network book, I have issues

> trusting

> doctors. So I was wondering if anyone here is from New Jersey and

> could suggest

> some doctors. Or also if anyone has any views on taking her to

> Columbia

> regularly. Any suggestions would be help.

>

> thanks.

> Pattie

>

>

>

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> They suggest opting out of my policy and just use her medicaid

through SSI.

> The red flag goes up for me on that. I think that would be a bad

move.

This just prompted me to ask how many of you have medicaid for your

CF child? I hate when they change insurance carriers on you. Ours did

that not long ago but fortunately his pediatrician was covered.

Becaue the hospital where his CF doctor accpets the insurance we

have, his CF docotr had to accept it as well.

jan

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My daughter w/CF is on Medicaid through her SSI, which we are about to lose

because of my husbands income. Anyone have any suggesstions? His insurance

through his employer will not cover most of her stuff. Her doc is considered

out of network, and they don't have coverage for ANY out of network physician.

Even though her doc is a CF doc at the ONLY accredited CF center in our state!!!

Just venting, sorry!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

najnest wrote:

> They suggest opting out of my policy and just use her medicaid

through SSI.

> The red flag goes up for me on that. I think that would be a bad

move.

This just prompted me to ask how many of you have medicaid for your

CF child? I hate when they change insurance carriers on you. Ours did

that not long ago but fortunately his pediatrician was covered.

Becaue the hospital where his CF doctor accpets the insurance we

have, his CF docotr had to accept it as well.

jan

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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Jan,

We had both medicaid and regular insurance for . The MA covered the co

pays and what not. Unfortunately, our insurance, through my hubby's work, went

up so much that we had to put on MA alone. Lucky for us, the CF clinics

do accept MedicAid.

Re: Insurance issues

> They suggest opting out of my policy and just use her medicaid

through SSI.

> The red flag goes up for me on that. I think that would be a bad

move.

" This just prompted me to ask how many of you have medicaid for your

CF child? "

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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Katy,

We were in an HMO that demanded we take Zach to a very bad cf doc

who was in network. We worked with the pediatrician to refer us to

an out of network clinic. They denied us and we appealed. I also

contacted the our state's Department of insurance. Had the HMO

denied our appeal we could have requested an independent review from

the Dept of insurance. Luckily the bad cf doc was so bad that he

didn't even write any office notes on Zach from our first visit. He

could not submit anything to the insurance company, so they approved

the out of network clinic. Since then Zach even got approved for an

out of network ent and had surgery at the out of network hospital.

Insurance companies make arbitrary rules without diseases like cf in

mind. If need be have the pediatrican, pulmonologist, and any other

doctors that she sees write letters stating that is important that

she continue treatment at her current center. Insurance companies

love to deny all claims and then the take a closer look at the ones

that are appealed. We have switched to a PPO plan because the

referral process was so nervewracking. The new plan costs more but

we a lot more freedom.

Good luck witht he insurance fight!

Sara

>

> > They suggest opting out of my policy and just use her medicaid

> through SSI.

> > The red flag goes up for me on that. I think that would be a bad

> move.

>

> This just prompted me to ask how many of you have medicaid for

your

> CF child? I hate when they change insurance carriers on you. Ours

did

> that not long ago but fortunately his pediatrician was covered.

> Becaue the hospital where his CF doctor accpets the insurance we

> have, his CF docotr had to accept it as well.

>

> jan

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

>

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Sara,

Thanks for the info!!! If it comes down to needing to do what you did, atleast

I know what I am in for. Thank you again!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

dwson2 wrote:

Katy,

We were in an HMO that demanded we take Zach to a very bad cf doc

who was in network. We worked with the pediatrician to refer us to

an out of network clinic. They denied us and we appealed. I also

contacted the our state's Department of insurance. Had the HMO

denied our appeal we could have requested an independent review from

the Dept of insurance. Luckily the bad cf doc was so bad that he

didn't even write any office notes on Zach from our first visit. He

could not submit anything to the insurance company, so they approved

the out of network clinic. Since then Zach even got approved for an

out of network ent and had surgery at the out of network hospital.

Insurance companies make arbitrary rules without diseases like cf in

mind. If need be have the pediatrican, pulmonologist, and any other

doctors that she sees write letters stating that is important that

she continue treatment at her current center. Insurance companies

love to deny all claims and then the take a closer look at the ones

that are appealed. We have switched to a PPO plan because the

referral process was so nervewracking. The new plan costs more but

we a lot more freedom.

Good luck witht he insurance fight!

Sara

>

> > They suggest opting out of my policy and just use her medicaid

> through SSI.

> > The red flag goes up for me on that. I think that would be a bad

> move.

>

> This just prompted me to ask how many of you have medicaid for

your

> CF child? I hate when they change insurance carriers on you. Ours

did

> that not long ago but fortunately his pediatrician was covered.

> Becaue the hospital where his CF doctor accpets the insurance we

> have, his CF docotr had to accept it as well.

>

> jan

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

>

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Katy; this is awful; I do hope you can find a solution. Love, n

Re: Re: Insurance issues

My daughter w/CF is on Medicaid through her SSI, which we are about to lose

because of my husbands income. Anyone have any suggesstions? His insurance

through his employer will not cover most of her stuff. Her doc is considered

out of network, and they don't have coverage for ANY out of network physician.

Even though her doc is a CF doc at the ONLY accredited CF center in our state!!!

Just venting, sorry!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

najnest wrote:

> They suggest opting out of my policy and just use her medicaid

through SSI.

> The red flag goes up for me on that. I think that would be a bad

move.

This just prompted me to ask how many of you have medicaid for your

CF child? I hate when they change insurance carriers on you. Ours did

that not long ago but fortunately his pediatrician was covered.

Becaue the hospital where his CF doctor accpets the insurance we

have, his CF docotr had to accept it as well.

jan

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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In a message dated 1/18/2004 7:35:41 PM Central Standard Time,

great_yensen@... writes:

This just prompted me to ask how many of you have medicaid for your

CF child? I hate when they change insurance carriers on you. Ours did

that not long ago but fortunately his pediatrician was covered.

Becaue the hospital where his CF doctor accpets the insurance we

have, his CF docotr had to accept it as well.

jan

My oldest is on Medicaid but my youngest is not because she does not have any

damage to her lungs so they said she did not have a disability. Deb A

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you might try applying for share of cost medicaid through your local social

services office you will have to p[ay a portion of it but it should pick up most

of what your insurance doesn't and in some cases will even pay the insurance

premiums for you. I know they do this in CA

Maureen

Re: Re: Insurance issues

My daughter w/CF is on Medicaid through her SSI, which we are about to lose

because of my husbands income. Anyone have any suggesstions? His insurance

through his employer will not cover most of her stuff. Her doc is considered out

of network, and they don't have coverage for ANY out of network physician. Even

though her doc is a CF doc at the ONLY accredited CF center in our state!!! Just

venting, sorry!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

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In a message dated 1/19/2004 12:09:08 AM Central Standard Time,

kinipela2@... writes:

Katy,

Hello from VA!

Have you thought about calling the point of contact at the CF Foundation in

Bethesda, MD ... she is a lawyer, I believe, who works with families on

patients rights, health insurance, etc ... last name is Suffian, I believe.

If anyone out there in cyberspace has more specifics on the person I'm

referring to, please chime in ... smile.

Thanks.

Jen Chastain

Her name is Beth Sufian she lives in Houston Texas. She was in last year Tobi

calendar she was the month of October. She is the sweetest lady! She has

helped me a time or two. Ask Grandma Bev for her phone number that is where I

got

it. Deb A

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OUR ATTORNEY angel guardian :):):)

BETH SUFAIN (wcf) info;

1--office #

1--fax

BethSufain@...

Passamano@... (hubby & partner-LAW FIRM)

811-Rusk Ave.,Ste 712

Houston, TX.77002

I hope this helps. This is info from her business card ----GOOD LUCK!!

LOVE & HUGS, GrandmomBEv

Re: Re: Insurance issues

Sara,

Thanks for the info!!! If it comes down to needing to do what you did,

atleast I know what I am in for. Thank you again!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

dwson2 wrote:

Katy,

We were in an HMO that demanded we take Zach to a very bad cf doc

who was in network. We worked with the pediatrician to refer us to

an out of network clinic. They denied us and we appealed. I also

contacted the our state's Department of insurance. Had the HMO

denied our appeal we could have requested an independent review from

the Dept of insurance. Luckily the bad cf doc was so bad that he

didn't even write any office notes on Zach from our first visit. He

could not submit anything to the insurance company, so they approved

the out of network clinic. Since then Zach even got approved for an

out of network ent and had surgery at the out of network hospital.

Insurance companies make arbitrary rules without diseases like cf in

mind. If need be have the pediatrican, pulmonologist, and any other

doctors that she sees write letters stating that is important that

she continue treatment at her current center. Insurance companies

love to deny all claims and then the take a closer look at the ones

that are appealed. We have switched to a PPO plan because the

referral process was so nervewracking. The new plan costs more but

we a lot more freedom.

Good luck witht he insurance fight!

Sara

>

> > They suggest opting out of my policy and just use her medicaid

> through SSI.

> > The red flag goes up for me on that. I think that would be a bad

> move.

>

> This just prompted me to ask how many of you have medicaid for

your

> CF child? I hate when they change insurance carriers on you. Ours

did

> that not long ago but fortunately his pediatrician was covered.

> Becaue the hospital where his CF doctor accpets the insurance we

> have, his CF docotr had to accept it as well.

>

> jan

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

>

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I know, I cannot type either, but this I do have right: Beth SUFIAN, not

Sufain! Sorry, Bev! Love, n

Re: Re: Insurance issues

Sara,

Thanks for the info!!! If it comes down to needing to do what you did,

atleast I know what I am in for. Thank you again!!!

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

dwson2 wrote:

Katy,

We were in an HMO that demanded we take Zach to a very bad cf doc

who was in network. We worked with the pediatrician to refer us to

an out of network clinic. They denied us and we appealed. I also

contacted the our state's Department of insurance. Had the HMO

denied our appeal we could have requested an independent review from

the Dept of insurance. Luckily the bad cf doc was so bad that he

didn't even write any office notes on Zach from our first visit. He

could not submit anything to the insurance company, so they approved

the out of network clinic. Since then Zach even got approved for an

out of network ent and had surgery at the out of network hospital.

Insurance companies make arbitrary rules without diseases like cf in

mind. If need be have the pediatrican, pulmonologist, and any other

doctors that she sees write letters stating that is important that

she continue treatment at her current center. Insurance companies

love to deny all claims and then the take a closer look at the ones

that are appealed. We have switched to a PPO plan because the

referral process was so nervewracking. The new plan costs more but

we a lot more freedom.

Good luck witht he insurance fight!

Sara

>

> > They suggest opting out of my policy and just use her medicaid

> through SSI.

> > The red flag goes up for me on that. I think that would be a bad

> move.

>

> This just prompted me to ask how many of you have medicaid for

your

> CF child? I hate when they change insurance carriers on you. Ours

did

> that not long ago but fortunately his pediatrician was covered.

> Becaue the hospital where his CF doctor accpets the insurance we

> have, his CF docotr had to accept it as well.

>

> jan

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

>

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  • 1 year later...

Hi,

I have found that the best place to go FIRST is the HR department at

the company where you have insurance (in this case your husband's).

They should have notified you and may be able to help work with

you. My husband's employer got the HMO and dental to cover my

stepson who lives in Chile even though he doesn't have a SSN. So,

whenever he comes to visit (every other year for several mo nths

usually) it is medical city but he is covered - only because they

helped. If you call and explain they MAY (depending on the

compnay/person) be willing to help. They need to understand they

should be responsible for absolute lack of notification but take a

deep breawth before you call or like me you might offend them by

yelling first :)

> I just found out last week that my husband's employer changed

> insurance companies, which is GREATLY going to impact the amount

we

> spend out of our pocket for . They did not inform us they

> were doing this, and in fact, sent home new insurance cards 3

weeks

> after the policy became effective. During that time period, we

had 2

> doctor's office visits with a non-participating provider on the

new

> plan and ordered monthly medical supplies from a non-

participating

> DME provider. Of course, we wouldn't have done this had we known

his

> employer switched insurance coverage!

>

> We are going from an HMO (have always had one) to a PPO. I know

most

> people bash HMOs, but it has been a godsend for us. We already

spend

> a LOT of money on co-pays for doctors, pharmacy,

hospitalizations,

> diagnostic testing, etc. even with an HMO. This PPO is going to

kill

> us. The biggest cost we are facing is to cover durable medical

> equipment (DME) expenses and I have no idea what is going to

happen

> with the GH & Lupron now. We finally got the HMO to approve a

Zevex

> Enteralite Infinity pump a little over a month ago, and now the

DME

> company we were using is not a provider under the PPO. It took

us

> months to get this pump covered. Now we have to start all over,

and

> here's the kicker - after meeting a $1000 deductible (in which co-

> pays for covered services do not count towards), we then have to

pay

> 20% of the DME expenses. We paid nothing for DME on the HMO.

Also

> unfortunate for us, is that the effective date was 9/1/05. That

> means we need to meet our deductible & maximum out of pocket

expenses

> for this year between now and 12/31, and then we have to start

from

> zero again in January.

>

> I have to admit I don't fully understand how a PPO works as I

have

> never had one, but I have read the benefits book from cover to

cover

> several times, and it doesn't look good for us. For anyone who

has

> had both an HMO and a PPO, which plan was most beneficial for

your

> child with extensive medical issues? Does it make sense for me

to

> add to my insurance policy to provide him coverage under

2

> policies? I am covered under my employer - not my husband's, and

I

> have an HMO for myself, but with a different company. My open

> enrollment period is now, so I need to make a decision quickly.

Does

> anyone know how it works when you have additional insurance

coverage?

> We are already paying about $260/month for coverage of the kids on

my

> husband's plan. I'll have to pay another $410/month to add him to

my

> policy. Is it worth it? We don't qualify for Medicaid or any

other

> services, but I have read about others on this listserve who also

> have health insurance & who get assistance from their state with

> medical coverage that is not based on income. If you are one of

> these people, how did you get this?

>

> I don't know about the rest of you, but I spend HOURS on the

phone

> with insurance companies, doctors, hospitals, etc. trying to get

> things authorized, correct billing errors, and just get what my

son

> needs. It is extremely frustrating for me (lucky for the

insurance

> company I haven't had a nervous breakdown yet, as that would be

more

> expenses they would have to pay for my psychiatry fees - lol).

But

> all joking aside, sometimes I feel like I am not far off.... I

am

> sure some of you can empathize with me. To top it off,

is

> having surgery on Tuesday, and I have no idea what we will have

to

> pay for this with the new insurance. Sorry to vent for so long,

but

> I don't know how else to relieve some of this frustration!

>

> Kim C.

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hey kim!!

we have had a PPO in the past and for us even though it cost more it

was better because not all of christopher's dr were on the HMO plan but

with the PPO we could go out of network and it would still be covered

(we had to pay a little more then had we stayed in network, but it was

worth it knowing i didnt have to change all of his drs!!) and we didnt

need referrals either!! you may want to add him on to your this way

what ever your husbands doesnt cover your will pick up the rest, if you

can swing the extra cost. remember you can also deduct the amount paid

for your insurance off of your income tax when you file next year!!

good luck!!

jodie c

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Kim,

Along the lines of what Kim said, if you get a doc who's a dud, you have

more options for changing under a PPO.

Inga

At 12:29 PM 9/29/2005 +0000, you wrote:

>hey kim!!

>we have had a PPO in the past and for us even though it cost more it

>was better because not all of christopher's dr were on the HMO plan but

>with the PPO we could go out of network and it would still be covered

>(we had to pay a little more then had we stayed in network, but it was

>worth it knowing i didnt have to change all of his drs!!) and we didnt

>need referrals either!! you may want to add him on to your this way

>what ever your husbands doesnt cover your will pick up the rest, if you

>can swing the extra cost. remember you can also deduct the amount paid

>for your insurance off of your income tax when you file next year!!

>good luck!!

>

>jodie c

>

>

>

>

>

>

>

>

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