Alopecia World
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Administrative Law Judge - Cranial Prosthesis Coverage Appeals Presentation, Monday, August 10, 2009, Update
Hello Everyone, well Monday has come & gone & along with it my appeals presentation before the Administrative Law Judge.
A brief explanation,I am retired from the County of Riverside, after fighting for a Administrative Law Judge awarded me my medicare benefits. With the County I have insurance, I signed my medicare rights/coverage over to my current insurance, Secure Horizons.
When I lost all my hair in January my Dermatologist wrote out a request for a cranial prosthesis, (when I telephoned my insurance to verify if this was covered, I was told yes, if your physician makes a request, it is a medical necessity a wig is covered, especially if its for chemo/radiation therapy. In the process I found out Medicare does not cover wigs/cranial prosthesis, the sad fact is no one at medicare could tell me who makes these decisions.
When the first denial came in I appealed, when that appeal was denied I appealed again level 2, I completed level 3 appeal, Administrative Law Judge, from here it's level 4, Medicare Appeals Council. IF I have to I will take it all the way there.
Because if we don't speak up, we won't be heard.
I liked the Judge, she was very fair & had reviewed my case prior to the hearing.
I explained to the Judge I was going to begin with a brief explanation of Alopecia Areata, In giving a brief review of the disease auto immune linked, the disease triggers the immune system into suppressing the hair follicles, went on to say AA ranges in severity, from hair loss on the scalp, patches, to AA Totalis, more severe form of the disease, the entire head of hair is lost, the skin surface becomes totally smooth & devoid of hair then AA Universalis, the rarest & most severe form of the disease, which is what I have, explained that the entire body is devoid of hair, (from the head, eyebrows, eyelashes, arm & leg hair, under arm & feminine & even toe hair is gone)
With Universalis, the scalp is unprotected from the sun & elements, the yes are unprotected from dust & glare & the nose & sinuses are unprotected from foreign particles & bacteria.
I then went into the impact of the disease on patience. For those of us with AA & especially those of us with AAT & AAU it is devastating, physically & mentally, I then handed over a current letter from my Dermatologist, which again gave diagnosis, re-requested the CP, which was protection from elements, being proactive from exposure to elements & prevention of skin cancer.
This then enabled me to lead right into CP coverage, a CP in my case as well as those who have lost their hair to chemo/radiation therapy, scalp injury & severe burns qualifies as a medical necessity.
As a prosthetic device, it replaces a body part, my hair, it will correct a defect created by a disease.
As a orthotic appliance a CP is worn to correct a defect of body form or function. Protecting my fair scalp from the elements specifically to sun exposure, proactive in prevention of further skin cancer.
As for mental health, hair loss of this magnitude is devastating, emotionally & physically. One feels exposed, ugly, A CP makes one whole again, gain back lost self esteem & confidence.
I then went into & explained how our CP's differ from budget or department store wigs, Toni Braxton HSN, wigs, in quality, performance & service, this was the only time I used the term wig.
I went into to detail on CfP, they uphold to repeated use, the types of fabric & compounds used to re-created natural hair growth patterns & look like scalp, provide maximum comfort & just as someone is measured for a artificial arm, leg or eye, so we are measured for a CP.
I reiterated on the difference between CP & over counter wigs, difference in cost. Synthetic & real hair.
Then concluded with the importance of coverage for CP, while AA is not life threatening it is life altering; however,( at this point I wanted to say for 25% of us it was life threatening for that is the number of AA sufferers who contemplate suicide, being I could not verify this data which my Dermatologist gave me I opted to omit it). I continued on stating what it is like to look into a mirror, look into the face of a manikin, devoid of all facial features.
When one places a CP upon their head for that time they/we are whole again, they/we are one.
The Judge asked a few questions on CP & cost. Then the insurance representative who appeared over the phone stated, while they were empathetic everyone had to wear sunscreen. The look on the judges face was priceless, I didnt have to say a word. The judge did ask the insurance rep. if she had copies of the photos I had submitted, she said no, why, the Judge then stated because the defendants scalp is very no wait extremely fair. It is the reason I wanted to appear in person & without CP on my head. Yes I went in ah natural, scared but I did.
I think I did a good job. The problem is with Medicare, being they flatly do not cover, insurance does not have to pay for what medicare does not.
So we have to fight, for what is right, but with this on record it gives us ammunition. The more ammo we have the better. I am getting my Senators & Councilmen in on this, we need their help to change the laws.
I will let you know the decision as I may be going to Level 4 hearing.
I know this is long but hope it was worth the read, it may help someone else.
Most of all, thank you all for your support, it made a difference for me. I did this not only for myself but everyone else who has been rear ended by non coverage of CP.
Alopecian Power.
Pam
A brief explanation,I am retired from the County of Riverside, after fighting for a Administrative Law Judge awarded me my medicare benefits. With the County I have insurance, I signed my medicare rights/coverage over to my current insurance, Secure Horizons.
When I lost all my hair in January my Dermatologist wrote out a request for a cranial prosthesis, (when I telephoned my insurance to verify if this was covered, I was told yes, if your physician makes a request, it is a medical necessity a wig is covered, especially if its for chemo/radiation therapy. In the process I found out Medicare does not cover wigs/cranial prosthesis, the sad fact is no one at medicare could tell me who makes these decisions.
When the first denial came in I appealed, when that appeal was denied I appealed again level 2, I completed level 3 appeal, Administrative Law Judge, from here it's level 4, Medicare Appeals Council. IF I have to I will take it all the way there.
Because if we don't speak up, we won't be heard.
I liked the Judge, she was very fair & had reviewed my case prior to the hearing.
I explained to the Judge I was going to begin with a brief explanation of Alopecia Areata, In giving a brief review of the disease auto immune linked, the disease triggers the immune system into suppressing the hair follicles, went on to say AA ranges in severity, from hair loss on the scalp, patches, to AA Totalis, more severe form of the disease, the entire head of hair is lost, the skin surface becomes totally smooth & devoid of hair then AA Universalis, the rarest & most severe form of the disease, which is what I have, explained that the entire body is devoid of hair, (from the head, eyebrows, eyelashes, arm & leg hair, under arm & feminine & even toe hair is gone)
With Universalis, the scalp is unprotected from the sun & elements, the yes are unprotected from dust & glare & the nose & sinuses are unprotected from foreign particles & bacteria.
I then went into the impact of the disease on patience. For those of us with AA & especially those of us with AAT & AAU it is devastating, physically & mentally, I then handed over a current letter from my Dermatologist, which again gave diagnosis, re-requested the CP, which was protection from elements, being proactive from exposure to elements & prevention of skin cancer.
This then enabled me to lead right into CP coverage, a CP in my case as well as those who have lost their hair to chemo/radiation therapy, scalp injury & severe burns qualifies as a medical necessity.
As a prosthetic device, it replaces a body part, my hair, it will correct a defect created by a disease.
As a orthotic appliance a CP is worn to correct a defect of body form or function. Protecting my fair scalp from the elements specifically to sun exposure, proactive in prevention of further skin cancer.
As for mental health, hair loss of this magnitude is devastating, emotionally & physically. One feels exposed, ugly, A CP makes one whole again, gain back lost self esteem & confidence.
I then went into & explained how our CP's differ from budget or department store wigs, Toni Braxton HSN, wigs, in quality, performance & service, this was the only time I used the term wig.
I went into to detail on CfP, they uphold to repeated use, the types of fabric & compounds used to re-created natural hair growth patterns & look like scalp, provide maximum comfort & just as someone is measured for a artificial arm, leg or eye, so we are measured for a CP.
I reiterated on the difference between CP & over counter wigs, difference in cost. Synthetic & real hair.
Then concluded with the importance of coverage for CP, while AA is not life threatening it is life altering; however,( at this point I wanted to say for 25% of us it was life threatening for that is the number of AA sufferers who contemplate suicide, being I could not verify this data which my Dermatologist gave me I opted to omit it). I continued on stating what it is like to look into a mirror, look into the face of a manikin, devoid of all facial features.
When one places a CP upon their head for that time they/we are whole again, they/we are one.
The Judge asked a few questions on CP & cost. Then the insurance representative who appeared over the phone stated, while they were empathetic everyone had to wear sunscreen. The look on the judges face was priceless, I didnt have to say a word. The judge did ask the insurance rep. if she had copies of the photos I had submitted, she said no, why, the Judge then stated because the defendants scalp is very no wait extremely fair. It is the reason I wanted to appear in person & without CP on my head. Yes I went in ah natural, scared but I did.
I think I did a good job. The problem is with Medicare, being they flatly do not cover, insurance does not have to pay for what medicare does not.
So we have to fight, for what is right, but with this on record it gives us ammunition. The more ammo we have the better. I am getting my Senators & Councilmen in on this, we need their help to change the laws.
I will let you know the decision as I may be going to Level 4 hearing.
I know this is long but hope it was worth the read, it may help someone else.
Most of all, thank you all for your support, it made a difference for me. I did this not only for myself but everyone else who has been rear ended by non coverage of CP.
Alopecian Power.
Pam
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Comment by JeffreySF on August 14, 2009 at 12:04pm
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Bravo Pam!!!
Bring on The Power!!!
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Comment by Tasha Dingler on August 14, 2009 at 1:24pm
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Your a very strong person! and extremely well spoken perfect speach! THANK YOU!
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Comment by Barbara on August 14, 2009 at 3:14pm
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Amazing! I will compose something next week and get it to my legislators. We have to go to our Federal legislators, right, not State by State since Medicare is federal? Any suggestions? I would love to see a letter campaign on this site!
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Comment by panuelo girl on August 15, 2009 at 1:28pm
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Excellent work, please, please keep us posted.
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Comment by Dominique Cleopatra on August 15, 2009 at 5:02pm
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Brava!!
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Comment by Pamela Rosse on August 17, 2009 at 1:07am
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Hi Thea, I'm going through my information, I have quite a bit of material to go through between the NAAF material, several books I have on Alopecia & some material from British Newspaper The Guardian. I know it's here somewhere, it could be in the stack from my Dermatologist office of AMA stuff, but when I find it I will give it to you. I appreciate your patience.
Talk to you soon.
Pam
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Hi everyone, I have a clarification on the 25% of those suffering from Alopecia consider suicide.
Dr. B. Bagheri ( my second Dermatolotist) gave me information which I took to heart, when I asked for clarification on the stat's given to me at my appointment today we realized we had quite a misunderstanding. Dr. B explained that two years ago she attended a conference in Frankfurt, Germany, there a British, Dermatologist gave his findings on a 2 year study he did on a group of 100 Alopecia suffers of Totalis & Universalis. Of these 100, 25% of them had considered suicide.
I wanted to clarify that information I gave.
Nancy Parson's book Bald As A Bean, in the chapter titled Emotional Issues, she writes "Several years ago, afew shocking ( to me) (& me too), statistics on alopecia sufferers were published in the British paper The Guardian. The paper claimed that 48% of Alopecians admitted they had considered suicide." How sad a number is that. Is it me or does it seem that the UK is the only country doing active studies on Alopecia?
It's important the information we share is accurate, so I hope this clarification helps.
Pam
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I thought very long & hard about responding to Thea's comments as I have a great deal of respect for her & for what she has accomplished with BGDL which has helped so very many of us.
I am a simple woman, who treats others the way I like to be treated. I may not be the most intelligent person in this world but neither am I the most ignorant.
I am new to the world of Alopecia Areata Universalis, my wounds of eight (8) months are still fresh, open, bleeding & sore.
I found myself like so many of us afraid, devastated, overwhelmed & angry with my body for what it was doing to me & wondering why? I felt so very alone & so very very ugly.
Like so many of us I started that frantic search for answers, for clues to the whys & why me? I googled, I spoke to my physicians, went to the library & book stores. A gentlemen at our local bookstore found & ordered two (2) books for me, the first was one woman's view of her journey with, through & finally acceptance of her AU, Nancy Parsons, Bald As A Bean, the second was a wonderful little book by Leslie Ann Butler, If Your Hair Falls Out, Keep Dancing!. Of both these books Leslie Ann's book would be the one which helped me the most, for it was the one that led me to this wonderful site called AW.
In finding AW I would regain something I had lost, Hope & Faith.
Hope that feeling of believing that tomorrow could & will be better then today.
Hope, to want, to desire, to expect that of which is envisioned & may indeed happen.
You see I would never take hope away from another, nor would I quash what someone else may be trying to accomplish.
Eah of these wonderful people made a comment, wished a fellow AW member good luck, some were ready to write their representatives in an attempt to change laws for medical coverage; but , more then anything they were simply supporting a fellow AW member on her journey. A journey which she was asked to narrate by some explain what she had done in her appeal & did so for them.
In my documentation, I never cited Nancy Parsons as an authority. When I spoke of her & her book it was in an narrative comment, for example in addition to, this person found in her search, the following information from The Guardian. Heavens sake.
I wonder Thea, how you would have felt if someone said to you at the very beginning of BGDL, that perhaps to "improve the lives of people with alopecia today & for the foreseeable future, look in a different direction".
There may have possibly been no BGDL & how very sad that would have been, because look at all the good BGDL has done, look at what has been accomplished & most of all the lives touched & helped.
I thought & perhaps tis is very Polly Anna of me, but I thought being we were all in the same proverbial boat that it so important to support, encourage & back one another.
So much can be accomplished, one group may succeed in search while yet another in getting our disease out there with National Bald Out Day, while yet another battles for medical procedures & cranial prothesis coverage.
You see were not the only ones who would benefit from a change in cranial prosthesis coverage, especially with Medicare & MediCaid, those who have lost their hair to chemo & radiation therapy, severe scalp injury & burn victims all would benefit from a cranial prosthesis coverage win.
I grant were in a health care crises but look at history, were not the only generation who has had a crises in finances & health, look at our great & grand parents who survived the great depression, they pulled threw & so did heathcare. We saw the creation of Blue Cross Blue Shield, Kaiser & other major insurance companies along with Medicare & Medicaid as they came into existence.
With existence of these companies came the coverage battles. When MRI's & CT Scans were new, thew were not covered, but people & medical facilities battled for coverage spoke up & out what occurred, coverage.
If we don't battle for, if we don't continue to bring forth information & request coverage it will never happen. Where would we be if we had not opened our mouths & spoken up & out when it came to civil & women's rights issues?
No, I'm not stopping my appeal for a cranial prosthesis, I will continue to speak up & out, write my representatives, if we don't we get what we have done, nothing at all, I'm not the only one who will benefit should coverage be won.
Hope as the old southern saying goes, "Hope Floats" & there's nothing wrong with that.
Pam
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I had quite allot of time to think about this while recuperating. I'm not going into a long dissertation on this response. Why, well simply because this is subject matter of which we are never going to agree upon.
I concur whole heartily with the NAAF when they say "NEVER UNDERESTIMATE THE POWER OF A GROUP EFFORT"!!.
Now is the time to speak up & out.
I found out the importance of speaking up & out is, I received the notice from the Administrative Law Judge regarding my appeal. Her ruling, " Wholly Favorable", I won.
I won not only for fellow alopecians & me but also for those individuals who have been denied a cranial prosthesis by my insurance company who are undergoing chemo & radiation therapies, those suffering from severe scalp injury & burn victims.
Now is definitely the time to speak up & out to be heard in strong united voices.
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Comment by Mary on October 7, 2009 at 7:18pm
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I've come to this discussion late, having missed the original post while I was away. Pam, you did an amazing thing. This just goes to show how important every person is, and why we should fight for our rights. Congratulations!
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