Re: Gamma Globulin INSURANCE ISSUES - help!

[Guest guest]

I called BC today and they said they would cover IVIG as an office visit and

they would be billed directly for the treatment, BUT, they will most likely

ask for a letter of medical necessity along with " proof " (lab tests) confirming

the existence of a primary immune deficiency like hypogammaglobulinemia or

otherwise once they are hit with the huge bill. We fear that once they see that

all I have is a subclass deficiency (which to me IS a type of immune deficiency

but not to insurors), they'll reject the claim and my doc will be stuck with

the bill. I know in recent posts, one of you mentioned that someone was

getting coverage for offlabel use and that the doctor writes letters " proving "

the

patient needs IVIG and that it's helping her, so insurance covers it, while

another wrote that they have subclass deficiency (same as me) and the doctor

said

it was easy to get Medicare to cover it. Unfortunately, I am too young to

qualify for Medicare.

So, for those of you have subclass deficiency or are using IVIG for offlabel

dysfunctions and have had success getting insurance coverage, please let me

know how your practitioners are getting insurance (doesn't matter if BC or not)

to cover. Even if the doc does everything in his power to write a " creative "

letter, he or whe still needs to back it up with lab work, so I don't see how

one gets around the system.

By the way, I was told today by one of the nation's leading suppliers of

gamma globulin products, that Gamimune has or is being discontinued and an

updated, better product has taken its place called Gamunex.

In a message dated 3/19/2004 1:42:34 AM Pacific Standard Time,

dorisbrown9@... writes:

I would definitely get preapproval from BC. When I took shots of GG they

wouldn't cover them because of a clause in my policy that said they didn't cover

" blood products. " And GG is made from blood. Now I am on Medicare and they

don't seem to have a problem covering it.

Doris

Re: Gamma Globulin

Okay - I did it, finally convincing my local wholistic practitioner to

agree o give me IVIG treatment for my IgG3 subclass deficiency!

Now, the challenge will be a) to get my insurance (Blue Cross) to agree to

cover in-office sessions, that my doc has never done it before as far as

I know, c) where he can obtain the Gamimune or whatever the best is, and d)

what safety precautions and contraindications need to be figured into the

picture prior to treatment since this is, after all, a human blodd product, and

does carry some degree of risk not just with the contamination, but allergic

response or sensitivities.

[Guest guest]

Believe me, most of us are not getting medicare because of age. It is because

of disability. I almost declined coverage but GG was a reason I did not.

Doris

[Guest guest]

In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

dorisbrown9@... writes:

Believe me, most of us are not getting medicare because of age. It is

because of disability. I almost declined coverage but GG was a reason I did

not.

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

I am self-employed and call my own shots; how 'creative' can I be? What

substantiation do they need in order to qualify or would they just take your

word

for it that you're unable to be gainfully employed?

In a message dated 3/24/2004 8:18:35 PM Pacific Standard Time,

duckblossm@... writes:

Unable to engage in significant gainful employment.

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

dorisbrown9@... writes:

Believe me, most of us are not getting medicare because of age. It is

because of disability. I almost declined coverage but GG was a reason I

did not.

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

Unable to engage in significant gainful employment.

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

dorisbrown9@... writes:

Believe me, most of us are not getting medicare because of age. It is

because of disability. I almost declined coverage but GG was a reason I did

not.

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

well, are you gainfully employed in a way that provides you with a substantial

income that meets your needs or not? Do you currently pay taxes on your

self-employment? (I am not asking you to tell me your answer.)

I would be in the gutter without disability. No way I can meet my own needs.

If you are actually disabled it is easier to prove it. No, they don't just take

your word. It is done with the help of doctors' evaluations. First yours, then

theirs. I don't know how SSD works, but for SSI a doc has to instruct you not to

work.

Ultimately it also took the help of a (legal aide) lawyer, who explained to an

administrative judge the exact limits I had. But I was blessed; I got a judge

that never turned people away. It is a daunting process with several levels of

appeals. (Again, I refer to SSI only). It took well over a year.

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

dorisbrown9@... writes:

Believe me, most of us are not getting medicare because of age. It is

because of disability. I almost declined coverage but GG was a reason I

did not.

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

Although I've read a number of posts with this subject header I

haven't read all and so this reply might not be on target. When Doris

asked what constitutes disability I assumed,since Medicare was being

talked about as an insurance that has covered GG, that a prior

statement that to qualify for Medicare before age 65 you have to be

disabled.

If I'm right about the sequence I wanted to make sure you know that

the issue isn't if you're too disabled to work in the area that your

previous education and work experience suggests, it requires that you

apply for and receive Social Security Disability Insurance.

After two years on it you are eligible for Medicare.

Re GG and Medicare, the doc who felt I might do well on GG gave me

three IV infusions (lasting about an hour and a half long). After the

2nd one I felt enormously better for a day or two and might have

overdone it and thus undermined the good, which was a huge downer for

me. I looked forward to the third treatment and did get it and

responded well about l/2 hr into the treatment,like my body was

cleared of pain and gunk. But by the time I got home (about a 3/4 hr

ride) I felt lousy.

I proposed we try giving them to me more often, as someone on the

list was getting good results that way and also I saw it could do

something that helped me. BUT, the doc refused. Medicare won't

preapprove what they'll cover. The cost of an infusion of the size I

had (I forget) was thousands of dollars and he knew I couldn't pay.

I did everything I could to find out if there was any way for

Medicare to commit to a certain # of treatments. One woman there said

they'd probably cover it. But there's no literature that really could

be brought to them and this doc wasn't willing to risk being out by

several thousand.

Don't be discouraged. Just forewarned. Someone on the list in Calif

got the state Medicaid to cover it but I think she was doing IM,

though I don't know the difference in amount used and thus cost.

Judith Wisdom

> I am self-employed and call my own shots; how 'creative' can I be?

What

> substantiation do they need in order to qualify or would they just

take your word

> for it that you're unable to be gainfully employed?

>

> In a message dated 3/24/2004 8:18:35 PM Pacific Standard Time,

> duckblossm@c... writes:

> Unable to engage in significant gainful employment.

> Adrienne

> Re: Gamma Globulin INSURANCE ISSUES -

help!

>

>

> In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

> dorisbrown9@y... writes:

> Believe me, most of us are not getting medicare because of age.

It is

> because of disability. I almost declined coverage but GG was a

reason I

> did not.

> I'm assuming you have to be disabled to qualify? What constitutes

being

> disabled?

>

>

>

[Guest guest]

What's your diagnosis and what tests did the doc do to substantiate a claim

for insurance?

In a message dated 3/25/2004 1:20:41 AM Pacific Standard Time, wisdomjf

@aol.com writes:

Although I've read a number of posts with this subject header I

haven't read all and so this reply might not be on target. When Doris

asked what constitutes disability I assumed,since Medicare was being

talked about as an insurance that has covered GG, that a prior

statement that to qualify for Medicare before age 65 you have to be

disabled.

If I'm right about the sequence I wanted to make sure you know that

the issue isn't if you're too disabled to work in the area that your

previous education and work experience suggests, it requires that you

apply for and receive Social Security Disability Insurance.

After two years on it you are eligible for Medicare.

Re GG and Medicare, the doc who felt I might do well on GG gave me

three IV infusions (lasting about an hour and a half long). After the

2nd one I felt enormously better for a day or two and might have

overdone it and thus undermined the good, which was a huge downer for

me. I looked forward to the third treatment and did get it and

responded well about l/2 hr into the treatment,like my body was

cleared of pain and gunk. But by the time I got home (about a 3/4 hr

ride) I felt lousy.

I proposed we try giving them to me more often, as someone on the

list was getting good results that way and also I saw it could do

something that helped me. BUT, the doc refused. Medicare won't

preapprove what they'll cover. The cost of an infusion of the size I

had (I forget) was thousands of dollars and he knew I couldn't pay.

I did everything I could to find out if there was any way for

Medicare to commit to a certain # of treatments. One woman there said

they'd probably cover it. But there's no literature that really could

be brought to them and this doc wasn't willing to risk being out by

several thousand.

Don't be discouraged. Just forewarned. Someone on the list in Calif

got the state Medicaid to cover it but I think she was doing IM,

though I don't know the difference in amount used and thus cost.

Judith Wisdom

> I am self-employed and call my own shots; how 'creative' can I be?

What

> substantiation do they need in order to qualify or would they just

take your word

> for it that you're unable to be gainfully employed?

>

> In a message dated 3/24/2004 8:18:35 PM Pacific Standard Time,

> duckblossm@c... writes:

> Unable to engage in significant gainful employment.

> Adrienne

> Re: Gamma Globulin INSURANCE ISSUES -

help!

>

>

> In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

> dorisbrown9@y... writes:

> Believe me, most of us are not getting medicare because of age.

It is

> because of disability. I almost declined coverage but GG was a

reason I

> did not.

> I'm assuming you have to be disabled to qualify? What constitutes

being

> disabled?

>

>

>

[Guest guest]

With all that hassle, there's just no way I would qualify then. What is/was

your diagnosis that the doc used to get it through? Again, I fear that it will

all come down to proving that I have a primary immune deficiency which I

don't, I have subclass deficiency, which is not considered a disease, hence, no

coverage.

In a message dated 3/24/2004 11:21:43 PM Pacific Standard Time,

duckblossm@... writes:

well, are you gainfully employed in a way that provides you with a

substantial income that meets your needs or not? Do you currently pay taxes on

your

self-employment? (I am not asking you to tell me your answer.)

I would be in the gutter without disability. No way I can meet my own needs.

If you are actually disabled it is easier to prove it. No, they don't just

take your word. It is done with the help of doctors' evaluations. First yours,

then theirs. I don't know how SSD works, but for SSI a doc has to instruct you

not to work.

Ultimately it also took the help of a (legal aide) lawyer, who explained to

an administrative judge the exact limits I had. But I was blessed; I got a

judge that never turned people away. It is a daunting process with several

levels

of appeals. (Again, I refer to SSI only). It took well over a year.

Adrienne

[Guest guest]

The CFIDS Association used to have a good disability primer in their

materials library. I found this very helpful when I applied for disability.

Also,

getting an attorney who works with social security disability is essential. A

doctor must use specific language in letters (generally with the phrase

" patient is 100% disabled " ) and, frankly, if you're working at all, you probably

won't get disability, even if you can only work part-time at home. Supportive

documents can include lab tests, articles on CFIDS, symptom diaries, letters

from

former employers or friends or partners, and material from doctors. It's

best to be organized and informed before you apply, or you will end up with many

rejections and appeals (and you'll likely have some of these anyway).

Peggy

[Guest guest]

Even if you have not worked enough to apply for Social Security Benefits or

Medicare, you can qualify for Supplimental Security Income Disability

[Guest guest]

In a message dated 3/25/2004 8:44:49 PM Central Standard Time,

duckblossm@... writes:

> The diagnosis does not depend on any tested deficiency. There is no test

> for this diagnosis.

>

There is a test for hypogammaglobulinanemia.

Carole

[Guest guest]

Important questions but the answers are deep in some unfiled files!

I don't know what dx he used. I don't think it was CFS but some

immunological dx. The specific tests he used were my helper to

suppressor ratio and several immunoglobulin levels. If you really

need the specifics let me know. They actually might be filed now

that I think of it.

I do know he was giving GG to many patients whose own dx's were many:

CFS,Lyme, AIDS, cancer, but I never asked him what they (we) had in

common re our immune tests. Or if we did. He was/is a strange guy

that I never figured out. He trained at Sloan Kettering in oncology

and immunology, did stuff there with hyperthermia, is a consultant to

a respected hospital here, in their oncology dept, has gone very part

time which he claims to be the result of PA's high insurance rates.

Promised me that when my CFS doc died and the subsequent one closed

her practice a month after I started with her to everyone's shock

that he'd be my CFS doc. I started bringing him lit and tapes and

all of a sudden he said he was overwhelmed by the complexity and

amount,but I saw he was reading nada. He is quirky and bright but

strange, at least to me and those who drove me there and hung around.

The CFS patients andthe Lyme patient were far more healthy than I

was,and I could only guess at who were cancer patients based on

baldness. I am not aware that he used the tests when submitting to

medicare, just the dx but I assume the tests were the basis on which

he felt I could benefit.

He wasn't committed enough or steeped enough in my care once he

realized what was involved in that committment. I don't think he

realized how complex CFS is,though the doc who sent me to him

originally was the woman who went out of business,who was very

knowledgeable about CFS and alternative medicine. Apparently they

were in a group of docs interested in some of the samethings.

I never knew enough to put it all together even though I tried. It

was a very stressful experience for me because he seemed to go into

reverse with no explanation and didn't even try to fight for me toget

coverage. Again,let meknow if you want me to check the specific

tests.

Judith Wisdom

> > I am self-employed and call my own shots; how 'creative' can I

be?

> What

> > substantiation do they need in order to qualify or would they

just

> take your word

> > for it that you're unable to be gainfully employed?

> >

> > In a message dated 3/24/2004 8:18:35 PM Pacific Standard Time,

> > duckblossm@c... writes:

> > Unable to engage in significant gainful employment.

> > Adrienne

> > Re: Gamma Globulin INSURANCE

ISSUES -

> help!

> >

> >

> > In a message dated 3/24/2004 2:25:30 AM Pacific Standard Time,

> > dorisbrown9@y... writes:

> > Believe me, most of us are not getting medicare because of

age.

> It is

> > because of disability. I almost declined coverage but GG was a

> reason I

> > did not.

> > I'm assuming you have to be disabled to qualify? What

constitutes

> being

> > disabled?

> >

> >

> >

[Guest guest]

It means you are unable to work (hold any job in the national economy) for the

forseeable future. You apply for SSDI which stands for Social Security

Disability Insurance. They send you to doctors. You have to be pretty sick

(really unable to work), and you should have tests to support that you are sick

and doctors letters to explain why you cannot work. For example, because you

are so fatigued you can't get out of bed, because if you go out shopping one

time you end up in bed for a week, because you have cognitive impairments, etc.

I am not saying it is easy but there are definitely those of us with CFS that

get this.

Oh, and you have to have worked and earned social security credits to be

eligible.

Doris.

----- Original Message -----

From: nutrimedent@...

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

There are some specific limits. If you make more than $600 or so a month (not

the exact number, but close) then by default you are able to work and are not

eligible.

Doris

----- Original Message -----

I am self-employed and call my own shots; how 'creative' can I be? What

substantiation do they need in order to qualify or would they just take your

word for it that you're unable to be gainfully employed?

[Guest guest]

Could you direct me to a source where I could learn more about this?

lindaj@...

Re: Gamma Globulin INSURANCE ISSUES - help!

> Even if you have not worked enough to apply for Social Security Benefits

or

> Medicare, you can qualify for Supplimental Security Income Disability

>

>

[Guest guest]

I have been on disability since the early'80's. My diagnosis was major

depression. No one I knew was talking about CFS then. I didn't get my real

diagnosis for several years after that.

I was training to be a therapist, and during my internship, someone came to me

to adjust to this chronic illness she had. The more she talked about her

symptoms, the more I identified. She finally told me the name of her problem. (I

didn't really do her much good, at least not at first. At first I thought she

was " somatasizing. " I met her socially some years later and she told me she

could tell I didn't believe her.)

Eventually some doc signed off on the correct diagnosis, but that made no

difference to my disability standing.

Having a subclass deficiency may not qualify you, but if you have a bunch of

other symtoms...? I mean, are you sick? The diagnosis does not depend on any

tested deficiency. There is no test for this diagnosis.

There used to be a non-specific category of disability that essentially said

" oh you have no one disorder but you have a collection of various disabling

symtoms? Ok " Don't know if that is changed.

Adrienne

No one has chimed in to say that SSDI is real different from what I have been

describing.(SSI) I hope that means I am not incorrect.

Re: Gamma Globulin INSURANCE ISSUES - help!

With all that hassle, there's just no way I would qualify then. What is/was

your diagnosis that the doc used to get it through? Again, I fear that it will

all come down to proving that I have a primary immune deficiency which I

don't, I have subclass deficiency, which is not considered a disease, hence,

no

coverage.

In a message dated 3/24/2004 11:21:43 PM Pacific Standard Time,

duckblossm@... writes:

well, are you gainfully employed in a way that provides you with a

substantial income that meets your needs or not? Do you currently pay taxes on

your

self-employment? (I am not asking you to tell me your answer.)

I would be in the gutter without disability. No way I can meet my own needs.

If you are actually disabled it is easier to prove it. No, they don't just

take your word. It is done with the help of doctors' evaluations. First yours,

then theirs. I don't know how SSD works, but for SSI a doc has to instruct you

not to work.

Ultimately it also took the help of a (legal aide) lawyer, who explained to

an administrative judge the exact limits I had. But I was blessed; I got a

judge that never turned people away. It is a daunting process with several

levels

of appeals. (Again, I refer to SSI only). It took well over a year.

Adrienne

[Guest guest]

And if you have not worked enough to qualify for SSDI, you then go ahead and

apply for SSI, which is for folks who don't qualify for SSDI.

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

It means you are unable to work (hold any job in the national economy) for the

forseeable future. You apply for SSDI which stands for Social Security

Disability Insurance. They send you to doctors. You have to be pretty sick

(really unable to work), and you should have tests to support that you are sick

and doctors letters to explain why you cannot work. For example, because you

are so fatigued you can't get out of bed, because if you go out shopping one

time you end up in bed for a week, because you have cognitive impairments, etc.

I am not saying it is easy but there are definitely those of us with CFS that

get this.

Oh, and you have to have worked and earned social security credits to be

eligible.

Doris.

----- Original Message -----

From: nutrimedent@...

I'm assuming you have to be disabled to qualify? What constitutes being

disabled?

[Guest guest]

Your local Social Security office can give all the info. And clarify the two

types of disability payments they administer- and the Medicare/ Medicaid side of

it, too.

You can go in or find their 800 number in the gov't pgs of the phone directory.

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

> Even if you have not worked enough to apply for Social Security Benefits

or

> Medicare, you can qualify for Supplimental Security Income Disability

>

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Here is the government website for SSDI and SSI.

http://www.ssa.gov/

As someone else mentioned, the CFIDS groups also have good info and links.

http://www.cfids.org/

There is a group called DISINISSUES, but they don't have archives online

so you have to just join and start reading new posts.

And www.Immunesupport.com has articles on how to get it.

http://www.immunesupport.com/library/powersearch2.cfm/T/CFIDS_FM/cat/disability

Doris

[Guest guest]

In a message dated 26-03-2004 3:49:23 Central Standard Time,

duckblossm@... writes:

> think we were talking about CFS/ME.

> Is the one you mention a disabling disease

Yes, it is all wrapped up with CFID(ID) immune dysfunction ME/ Fibro.

[Guest guest]

Carole

I think we were talking about CFS/ME.

Is the one you mention a disabling disease?

Adrienne

Re: Gamma Globulin INSURANCE ISSUES - help!

In a message dated 3/25/2004 8:44:49 PM Central Standard Time,

duckblossm@... writes:

> The diagnosis does not depend on any tested deficiency. There is no test

> for this diagnosis.

>

There is a test for hypogammaglobulinanemia.

Carole

[Guest guest]

Doris has provided some great info/links. This is a bit OT - It's been

a while for me - I still go thru reeval's every 4-5 yrs? (either on

paper, or actually going to an state/gov't assigned doc) - and I could

be mistaken - but I don't think the diagnosis or actual disease is the

foundation for getting SSDI or SSI. In fact, I initially went in with

" CFS dx " paperwork/tests, but the CFS has dropped down in import in

subsequent reevaluations (my last review included CFS as a

possibility, but first actually stated that, 'from multiple physicians

and tests', etc., it appears the patient has an autoimmune disease

and/or MS

Getting SSDI or SSI is more how functional/dysfunctional - debilitated

you are

Many diseases, including MS, Parkinson's Disease, Lupus, etc., greatly

vary in how debilitated the patient may or may not be. I lived next to

a guy who had MS, for a few yrs, and he was highly functional (he

wasn't in much MS pain, by his own account, but did have intermittent

vision problems), while I was mostly bedridden and not very ambulatory

They (still?) also look at what job(s) you have skills for or could

get trained for, and if your health would allow doing them, i.e, how

long can you sit or stand, can you lift so much weight, can you think

clearly enuf

Each case is independent and unique, and the evaluating docs can vary

considerably (as most things)

I recall my low Max V02 test added strength to my (initial) approval

(but I paid for it w/a harsh relapse), and good CFS specialists (and

probably CFS disability lawyers) would know what specific tests

could/should be done

A lot of info could be found on-line, to get a feel for potential

eligibility

Lance

> Here is the government website for SSDI and SSI.

> http://www.ssa.gov/

>

> As someone else mentioned, the CFIDS groups also have good info and

links. http://www.cfids.org/

>

> There is a group called DISINISSUES, but they don't have

archives online so you have to just join and start reading new posts.

>

> And www.Immunesupport.com has articles on how to get it.

http://www.immunesupport.com/library/powersearch2.cfm/T/CFIDS_FM/cat/disability

>

> Doris

>

>