Insurance Appeals

August 23, 2001

Concerning insurance:

When was 23, our insurance told us he would no longer be covered on

our policy. When we challenged that decision, they told us they would

continue it if he were physically handicapped, but not if he had a mental

disorder. So, living so close to the university and having a librarian

husband, I went to the science library and found digests of all the recent

articles from professional journals that I could locate that talked about OCD

being a neurobiological disorder. I put ten of the best together with a list

of all

's doctors, the history of his disorder, etc and had a lawyer write a

cover letter. is still on our health insurance at the age of 28!

The evidence for OCD being a physical disorder seems to be mounting every

day. Some of the most prestigious researchers have written documents on the

topic. So if you have such a library available, see what you can find that

talks about OCD as neurobiological and perhaps even an article about the

genetic aspects of OCD. I don't think the lawyer's letter hurt either. It

let them know we were determined and very serious about all this. If anyone

has any questions , let me know.

Jackie

August 23, 2001

I totally agree Judy,

I'm just so surprised that it has not been recognized and challenged

sooner. For anyone who is interested, the Bill that is in the House

of Reps is HR162 and the one in the Senate is S543. An update I just

read was that they are both doing well and that the decision will

need to be made before Sept. 30 in order to block the sunset

expiration of the 1996 Parity Act which is set to expire then. Keep

writing to your legislators!

My pediatrician said that these type of illnesses are still viewed as

purely behavioral because of way outdated views and biases and just

plain ignorance about the disorders. He feels that a call to the

insurance co's medical director (an M.D.) should open the door to

getting more visits approved - I hope he's right, but I'm not quite

so optimistic - I think it will take more pushing than that - but

we'll see - he's an absolutely fantastic pediatrician!

Terry

> I think we should challenge the idea that OCD, Tourettes, etc

are " mental " vs " medical " conditions. There is plenty of scientific

evidence that they are physical disorders--MRI, PET scans, response

to medication, etc. As long as the companies get away with making a

distinction between " mental " and " physical " illness, they will play

these games.

>

> Legislation has been proposed (parity legislation) that would make

this distinction by insurance companies illegal. We all need to get

our representatives and senators to support that legislation.

>

> Judy in Baltimore

> Insurance appeals (was:Re: Tourettes?)

>

> Thanks for the encouragement - I WILL have to be a squeaky

> wheel. I've already been told twice - flatly - " you can appeal,

but

> you will be denied, your plan only pays for 20 visits " . I

said " ok,

> fine, so WHEN I'm rejected, then what do I do? " " you appeal again

and

> it goes before a Ambudson Committee " ....a wha?

>

> Anyone have any arguements that were successful with insurance

> company appeals? We are going to probably try the " it's a medical

> condition " avenue first and then the " he will probably end up in

an

> inpatient program if he doesn't continue outpatient

> treatment " ....but....gee...I dunno....it just sounds too common

sense

> to work.....

August 24, 2001

Jackie,

This is good to know. My husband worries about coverage for our son.

We have heard differences on coverage from being enrolled in school

taking so many credits or certain age living at home.

You were really advocating for when you appealed to your

insurance company. I spent some time earlier tonight looking at the

Advocacy site that posted earlier. We are so fortunate living

in this information age and having all this available to us. We

actually got our computer and internet connection so I could find out

information on what was wrong with our son. It sure has been helpful.

This group has been my rock.

Vivian in WA ST

> Concerning insurance:

> When was 23, our insurance told us he would no longer be

covered on

> our policy. When we challenged that decision, they told us they

would

> continue it if he were physically handicapped, but not if he had a

mental

> disorder. So, living so close to the university and having a

librarian

> husband, I went to the science library and found digests of all the

recent

> articles from professional journals that I could locate that talked

about OCD

> being a neurobiological disorder. I put ten of the best together

with a list

> of all

> 's doctors, the history of his disorder, etc and had a lawyer

write a

> cover letter. is still on our health insurance at the age of

28!

> The evidence for OCD being a physical disorder seems to be

mounting every

> day. Some of the most prestigious researchers have written

documents on the

> topic. So if you have such a library available, see what you can

find that

> talks about OCD as neurobiological and perhaps even an article

about the

> genetic aspects of OCD. I don't think the lawyer's letter hurt

either. It

> let them know we were determined and very serious about all this.

If anyone

> has any questions , let me know.

> Jackie

August 24, 2001

Jackie - That's great! Do you happen to remember any specific

journals that were helpful? For that matter, has anyone here accessed

information from ocdresource.com? I know that Dr. Chansky referred to

them as being a very helpful resource in the writing of her book.....

Terry

> Concerning insurance:

> When was 23, our insurance told us he would no longer be

covered on

> our policy. When we challenged that decision, they told us they

would

> continue it if he were physically handicapped, but not if he had a

mental

> disorder. So, living so close to the university and having a

librarian

> husband, I went to the science library and found digests of all the

recent

> articles from professional journals that I could locate that talked

about OCD

> being a neurobiological disorder. I put ten of the best together

with a list

> of all

> 's doctors, the history of his disorder, etc and had a lawyer

write a

> cover letter. is still on our health insurance at the age of

28!

> The evidence for OCD being a physical disorder seems to be

mounting every

> day. Some of the most prestigious researchers have written

documents on the

> topic. So if you have such a library available, see what you can

find that

> talks about OCD as neurobiological and perhaps even an article

about the

> genetic aspects of OCD. I don't think the lawyer's letter hurt

either. It

> let them know we were determined and very serious about all this.

If anyone

> has any questions , let me know.

> Jackie

August 26, 2001

Dear Terry,

One book/journal I found interesting was: â€œNeurobiological Disorders in

Children and Adolescentsâ€. (Peschel, Peschel, Howe, and Howe, ed. - from

y-Bass Publishers, San Francisco, 1992)

I had not mentioned the titles of the articles I found since I was

doing this in 95-96. I was using articles from after 1990. There has been

so much published since then and I feel the more recent the articles, the

better.

I also used a pamphlet from the National Institute of Mental Health

entitled: Decade of the Brain;Obsessive Compulsive Disorder. This was

published in 1996.

Onee of the journals I used was: The Journal of Clinical Psychiatry. At

that time we were not on the internet and did not have access to things such

as Medscape. A topic search of their files might be helpful.

I did not actually go to the journals - I looked up the abstracts in the

Science Library online catalog and printed out those abstracts I felt were

pertinent. You might also do a search using the names of those involved in

much of the current research such as Jenike, Baer, Minichello, Griest,

VanOppen, Rauch, Rappoport, Swedo, etc.

The OC Bulletin can also be helpful. If you do not have copies of it, I

think you may be able to access their files through the Foundation site.

The Dean Foundation in Wisconsin can also be helpful. They have a

" Obsessive Compulsive Information Center " where they will look through

journals, etc for information on topics concerning OCD and will mail you

copies for a small charge. They are very helpful and also publish a booklet

called " Obsessive Compulsive Disorder: A Guide " which I have found helpful.

(In fact, I usually buy ten copies of the booklet at a time and give them to

people who need to know more about OCD, such as 's teachers and

doctors.) The Dean Foundation's web address is:

www.deancare.com

I hope some of this helps. Let me know if you have any questions about

any of it.

Jackie

December 3, 2005

Sophie,

Good luck with your appeal and don't stop fighting.Sometimes it takes them

2-3 times to break them down.

The whole thing is ridiculous.MTX isn't FDA aproved for JRA but it's a cheap

drug and been used for so long.

Start looking up Humira and find things written by ped rheumies.I know

Cincinnati Childrens did a trial on it and there findings were that it was just

as

strong as Remicade but the conveiniance of an every other week injection.Once

you find a couple pf peer reviewed pages send them in as well.

Our drug company is prescription solutions and on their website Enbrel and

Humira are the exact same price.

Good luck and if I find anything i will post it to the list.

Hugs

Becki and 7systemic

December 3, 2005

Sophie, I just wanted to say welcome to our group. Its hard enough

to deal with the disease and then to fight the insurance company on

top of it is certainly and unwanted additional burden. I know

others on the list will be able to direct you better on this

concern...You might be able to contact the pharmaceutical company

directly to see if they would provide it to you for free...Seems

like others have mentioned that before????

I remember reading some of your posts on the arthritis boards...I am

glad that you found this group as well. You might check out the

files section of this group and see if there are any additional

resources posted there.

Blessings,

(Aundrea 10 systemic jra)

>

> Hello. I am new here. I post a lot on the Arthritis Foundation

> discussion board, because I didn't know about this forum until

now.

> I have a five year old daughter, , who has had systemic jra

> for two years now. She had a ten month period during the last two

> years where she had no inflammation and her bloodwork was normal.

> She had a bad flare on Easter weekend and still has swelling in

her

> ankles and a little in her hips. She is currently on Enbrel, MTX

> (20mg injected), and naprosyn. Her doc is concerned because her

> platelet count is triple normal, and he said that indicates that

she

> falls into the subgroup of systemic kids that are resistant to

> treatment. He wants her to start Humira.

>

> Now on to my question! Our insurance company denied coverage of

the

> Humira, saying it was not FDA approved for the diagnosis. We sent

a

> letter from the doc stating why she needed it and we have been on

> hold waiting for an answer from them for three weeks. The

insurance

> is through my husband's union, and that means that they are not

under

> the state department of insurance, but federal ERISA regulations.

I

> have called to find out what is taking so long, and they were

really

> rude. I have a feeling they are going to deny our appeal. From

what

> I have read, the only recourse is to sue them in federal court.

> Anyone have any experience with insurance appeals?

>

> Thanks.

> Sophie

>

December 3, 2005

Hi Sophie - I read your email about your insurer denying coverage for the Humira

and asking for advice from others. We are also appealing our insurance

company's denial of our son's growth hormone. I think because we are both

lawyers (although I am not working at it anymore) we have been able to steer

ourselves through the process. Not that we will win our appeal...we shall see.

But, I could share with you that experience, and maybe that would be helpful.

It is infuriating - I know - the way the insurance companies try to get out of

paying for these expensive drugs, even on bogus grounds. Good luck and feel

free to call me, 503 224 1142. Jan Atwill (son systemic JRA age 6)

Re: Insurance appeals

Sophie, I just wanted to say welcome to our group. Its hard enough

to deal with the disease and then to fight the insurance company on

top of it is certainly and unwanted additional burden. I know

others on the list will be able to direct you better on this

concern...You might be able to contact the pharmaceutical company

directly to see if they would provide it to you for free...Seems

like others have mentioned that before????

I remember reading some of your posts on the arthritis boards...I am

glad that you found this group as well. You might check out the

files section of this group and see if there are any additional

resources posted there.

Blessings,

(Aundrea 10 systemic jra)

>

> Hello. I am new here. I post a lot on the Arthritis Foundation

> discussion board, because I didn't know about this forum until

now.

> I have a five year old daughter, , who has had systemic jra

> for two years now. She had a ten month period during the last two

> years where she had no inflammation and her bloodwork was normal.

> She had a bad flare on Easter weekend and still has swelling in

her

> ankles and a little in her hips. She is currently on Enbrel, MTX

> (20mg injected), and naprosyn. Her doc is concerned because her

> platelet count is triple normal, and he said that indicates that

she

> falls into the subgroup of systemic kids that are resistant to

> treatment. He wants her to start Humira.

>

> Now on to my question! Our insurance company denied coverage of

the

> Humira, saying it was not FDA approved for the diagnosis. We sent

a

> letter from the doc stating why she needed it and we have been on

> hold waiting for an answer from them for three weeks. The

insurance

> is through my husband's union, and that means that they are not

under

> the state department of insurance, but federal ERISA regulations.

I

> have called to find out what is taking so long, and they were

really

> rude. I have a feeling they are going to deny our appeal. From

what

> I have read, the only recourse is to sue them in federal court.

> Anyone have any experience with insurance appeals?

>

> Thanks.

> Sophie

>

December 3, 2005

Sophie:

Keep on them.

Your union insurance likely is administered by an insurance company. Go

through every appeal process they have. They likely have a time limit on

how long they have to consider your appeal. Its also likely that if they

deny your appeal, the denial letter will list how to go on to the next

appeals process. At some point, it will likely fall into the union's

hands, and from there I would find out who and start pressuring them. I

would also contact your state Attorney General's office, Department of

Insurance and they are a great source of info in helping you determine

where to go from there.

Persistence is the answer. If they know you are not going away, it is

likely that they will eventually give in. They are counting on wearing

you down and you giving up.

My husband's insurance is administered by United Health Care, but his

company is self insured. I finally went through all the appeals processes

and ended up with the human resources guy, and we got him his medication

he'd been denied this summer. Its a long story. He was in the union

insurance fund previously and so I am a bit familiar with these

processes; additionally, I work as an admissions nurse for a rehab

hospital and deal with insurance on a daily basis.

If I can help in any way, or you just want to bounce ideas off me, just

email me privately, ok?

Sincerest best wishes for you and !

and Rob 16 Spondy

Indiana

On Thu, 01 Dec 2005 18:04:39 -0000 " levindoss " <levindoss@...>

writes:

Hello. I am new here. I post a lot on the Arthritis Foundation

discussion board, because I didn't know about this forum until now.

I have a five year old daughter, , who has had systemic jra

for two years now. She had a ten month period during the last two

years where she had no inflammation and her bloodwork was normal.

She had a bad flare on Easter weekSopend and still has swelling in her

ankles and a little in her hips. She is currently on Enbrel, MTX

(20mg injected), and naprosyn. Her doc is concerned because her

platelet count is triple normal, and he said that indicates that she

falls into the subgroup of systemic kids that are resistant to

treatment. He wants her to start Humira.

Now on to my question! Our insurance company denied coverage of the

Humira, saying it was not FDA approved for the diagnosis. We sent a

letter from the doc stating why she needed it and we have been on

hold waiting for an answer from them for three weeks. The insurance

is through my husband's union, and that means that they are not under

the state department of insurance, but federal ERISA regulations. I

have called to find out what is taking so long, and they were really

rude. I have a feeling they are going to deny our appeal. From what

I have read, the only recourse is to sue them in federal court.

Anyone have any experience with insurance appeals?

Thanks.

Sophie

November 28, 2010

Hi all,

I was just wondering if anyone had any links or personal tips for going through

insurance appeals for Lyme treatment. I just got a letter yesterday that IV

antibiotics for Lyme treatment after 4 weeks isn't medically necessary so

they're not covering me. I submitted results from two different blood tests, a

spinal tap, and notes from three different doctors all of which came after two

different 4 week IV rounds so I'm just completely thrown for a loop here. I

don't see how in the face of all this proof they could say I'm better and was

hoping to hear from others with advice, tips on what to do next, or just what to

expect. I'd really appreciate it.

Thanks,

Jen

November 29, 2010

Definitely appeal. There is a form letter at www.lymedisease.org. Adapt

it to your specific situation. I need to revise it with the latest info

on the IDSA guidelines review process - it is a little out of date. You

can just cut the part that is no longer timely. You may not win but you

are costing them money dealing with you, and statistics are generated

that we can use to persuade policymakers that changes are needed.

For instance, CALDA CEO Lorraine discovered that the independent

review process adopted by the California Department of Managed Health

Care Independent Medical Review shows only 18% of Lyme case reviews

favoring the patients vs. a baseline of 41% favoring patients when all

cases submitted are considered (http://wp.dmhc.ca.gov/imr/ ).

This is not a flaw in the Independent Medical Review program, which is

widely acknowledged to be highly successful in terms of supporting

patient rights, but it does evidence the type of systemic discriminatory

action that is taken against Lyme patients as a result of review boards

adhering to treatment guidelines promulgated by experts with alliances

with the insurance industry (i.e. IDSA).

Phyllis Mervine

CALDA

Empowering Patients Through Advocacy, Education & Research

www.lymedisease.org

November 30, 2010

Thank you so much! The link will be helpful and the statistics will be helpful

for everyone. I hope everyone who runs into this problem will do the same. Its

so frustrating though when it happens to you personally. I just wish I knew of

something I could do now to actually help make a difference in getting the

guidelines changed besides just this.

Jen

From: Phyllis Mervine <pmerv@...>

Subject: [ ] Re: Insurance Appeals

Date: Monday, November 29, 2010, 11:24 AM

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