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Permalink Reply by sueb on March 14, 2013 at 3:31pm

Yes it is through the cancer society...Look Good, Feel Better. I think that is crazy that you have to have gone through chemo. I actually bought a custom fit wig that was VERY expensive, but I knew they wouldn't cover it from the research I have done. It bothers me but even more so they don't recognize alopecia as an illness. It's just really strange.

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Permalink Reply by Kate on March 16, 2013 at 4:50pm

Hi, I'm currently in Australia (i'd plan to come here as my hair began falling out and so by the time I got here I had none) Anyway, I looked for some sort of help here and I emailed the Australian Look Good Feel Better (which is the same organisation) and they were so lovely and invited me along and it is totally worth it. The thing is though, everyone else did have cancer so I felt a little like I was intruding and didnt have the right tobbe there as opposed to being told I couldnt.
Overall though the things they teach you there are so useful for us, they showed me different wigs, different scarves and things to do with makeup such as eyebrows which I needed desperately.
Maybe it would be worth contacting the organisation and seeing if they could do a couple of groups specifically for people with alopecia? If enough of us asked for it, I'm sure they'd have to at least consider?

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Permalink Reply by Christine on March 15, 2013 at 3:52pm

When I was getting to the point of buzzing it all and going with my wig, I contacted my insurance and talked with a lovely lady, who agreed completely with me about my need for a "full cranial prosthetic" and I followed all her directions to appeal their policy that they only cover one wig in a lifetime and only for chemotherapy?? I resubmitted my argument even including a personal letter and a letter from my doctor verifying my AA and with no hair it being my only option. In my letter I stressed the fact that chemotherapy is usually temporary loss, while mine is most likely permanent, they understand the emotional need for hair replacement for someone going through chemo but not mine! Sadly I received a letter declining my request and now they no longer cover wigs of any kind for any reason even chemotherapy. I purchased my expensive wig myself, and feel blessed that I was able to get such a lovely hair piece, but so sorry for the lack of understanding from the medical insurance.

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Permalink Reply by Abgail on March 16, 2013 at 4:05am

I like to laugh about this...... Its a strange thing..... Why do I have to pay alot for something which is free and people shave it off.I will never understand. And its funny tooo that its because of people I can't go bald without people being noisy or thinking I have the BIG C.Wigs give me the peace of mind of being a undercover werewolf. And wigs in the north pole aka my secret location ain't that great.Sometimes I think why bother? If you want to be taught wig care,scarf tying, make up ask me? Free of charge and you can ask any amount of questions and will show you youtube videos that helps...Make up I learnt through a friend who is a make up artist. And now I am good at it.But that's just how to do the eyelashes and I can put on false eyelashes.

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Permalink Reply by cathy clark on March 16, 2013 at 8:56am

Can't help you on the insurance-all companies are different. But about being part of a makeup and head coverings support thing-my experience at being both a cancer patient as well as someone with long standing total AU is that the two groups just don't mix. Cancer patients don't understand AU-they are too stressed and too new to the whole hair loss thing to be able to be supportive. They are so very distraught at losing their hair, that they often say things that are kind of off topic or maybe even insensitive to those of us who have learned to live with hair loss. And since they have had no time to do research, they are rally at the mercy of local high priced salons who sell them expensive synthetic wigs-often one that has been sitting on a shelf for months in the salon and already looks worn out.
Their need for support over hair loss and make up is kind of immediate.

I suggest you join Bald Girls Do Lunch BGDL-a great source of info on makeup and scarves etc.

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Permalink Reply by Susan Beausang on March 20, 2013 at 1:10pm

When I was first diagnosed with AU (11 years ago), I went to battle with my insurance company on this exact issue. I took it all the way to the insurance commissioner of the state that I lived in with pictures of my bald head - trying to convince them that my condition was a disease and my request for wig coverage was not cosmetic. I got no where! It's frustrating and unfair and this does need to be changed. I think some insurance companies are allowing one wig (for a lifetime)..what a joke. I mostly wear my scarves now but I strongly feel this is an issue that needs to be addressed.

Susan Beausang
4women.com

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Permalink Reply by sueb on March 20, 2013 at 4:32pm

Thank you for your reply Susan...it is super frustrating! I have already emailed our alabama insurance commission and got this response:
The Department of Insurance does not control health insurance company underwriting requirements and benefits. Listed at our web site www.aldoi.gov you can find a link for “Laws, Bulletins and Regulations. There are some health related requirements in these you may research. However, I’m not aware of anything referring to hair prosthetics. -----

Keep in mind health insurance is a fast changing area mostly controlled or guided in the future by the new federal government regulations. In my opinion, insurance companies at this point are concerned about basic coverage affordability and an uncertain market which will affect their mere sustainability. At this time there a lot of unanswered questions and future issues we are all waiting to resolve.------

I don’t believe this Insurance Department undertakes initiating special recommendations unless it is a general public and consumer protection issue that effects a certain number of population. It may be a political issue for your local State Representative. Good luck on your endeavor. -----

SO my next step is to BUG one of our state reps/senator who goes to our church and see what I can do next. Already emailed him but still haven't heard back from him yet. :-(

Thanks again! Sue

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