I NEED YOUR HELP! (A post from my sister)

We're trying to get this out and about and get as much support as possible.  So please spread the word and contact the representatives listed below.

Here is my sister's story in her own words:
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As you may or may not know my daughter has a disorder called Hyperinsulinism. Because of the events of late 2010 and early 2011 I had to put the kids on Medi-Cal in order for them to have medical coverage. Medi-Cal claims (at least on the letters I’ve received over the months) to cover Kaylee 100% for her medical care. Oh wait here’s the actual wording:

As of 02/01/2011 your child is eligible to receive Medi-Cal benefits without a share of cost under the 133% program for children one to six years of age.
Under this program, Kaylee’s Medi-Cal benefits will provide full Medi-Call Benefits.

Sounds wonderful huh? Well they lie. In February I tried to fill her medications under Medi-Cal. I knew each would need a TAR (which is like a proof of it being needed) because they aren’t standard medications you see given to children. Her main medication, the one she takes to keep her alive, is called Proglycem (also known as Diazoxide). This medical costs $165.00 per 30mL bottle. Kaylee’s prescription for Proglycem is for 180mL. This comes out to six bottles being needed to cover her needs.
Due to shortages in manufacturing the amount of bottles you can get per order is limited to three bottles. So we have to order every 15 days or so to cover her prescription. What does six bottles of Proglycem cost out of pocket? $990.00. We’re lucky, our local pharmacy gives us a discount and lets us purchase it at cost. Not every pharmacy is so nice. Costco for instance will only mark down their total price (for three bottles) by $20.00.
So you can see how impossible it would be to buy Kaylee’s full prescription every month, pay for daycare, school, rent, and utilities when I make $33K a year. Luckily in a few months (May or June) I will have medical benefits for the kids and myself (right now I’m totally uninsured).
So why am I giving all this info?
Remember that TAR to get the medication approved? They denied it.
Yes folks, they denied it. Why? Well at first the pharmacist told me it was because the medication cost too much. I said I wasn’t surprise to hear that. Then in what I assume was a “opps” moment for the pharmacist, she told me that Medi-Cal had determined that since the medication my daughter takes is typically only given to children with severe disabilities, that Kaylee must be severely disabled and thus eligible for another state program. I don’t for the life of me remember what that program is though.
I called my case worker asking her what we could do. She was stunned about the denial and got more information. She said that my daughter must be severely disabled to be taking her medication. I asked what severely disabled means (cause I already know but I wanted to know what their standards are). She said having severe retardation, autism, developmental delays, or needing constant care.
I told her that no one would know Kaylee has a medical problem unless I told them so. Kaylee is by all means a normal, healthy, 4.5 year old. She goes to school. Excels at school. Plays sports. Uses a computer better than Grandpappy. The only real thing I can see “wrong” with her is her ability to run is a bit off and her small motor skills (like using scissors) are not fully developed. She’ll catch up though, she always has.
But her language skills are above her age level, and she’s just eager to learn.
Plain and simple, Kaylee is not severely disabled.
Medi-Cal made a decision, based solely on what her medication is typically used for and the typical severity of the disorder and applied it to Kaylee. They didn’t bother to consult with her doctor, who would have laughed at them calling her disabled, because that’s exactly what he did when I told him. They just made the decision without gaining any knowledge of her medical history. And I believe it’s for the reason that pharmacist first told me. The medication costs a lot of money.
I asked my social worker what the process was to get it appealed. She said I could apply to the other program (which would take 30 days itself), get denied. Then submit an appeal to Medi-Cal which could take up to six months to process and get done (you have to have hearings).
So that’s six months of paying out of pocket. And that’s exactly what we’ve been doing.
So I need your help. I’ve looked up my local state representatives and I need you to send them emails/letters (whatever you feel appropriate) about this. I’m a newly single mother, who just started a new job, is getting little to no monetary support from their father, and I have not enough to cover the total cost of the med. We’re slowly but surely draining my mother’s savings to pay for the medication and I feel that it’s utterly wrong for Medi-Cal to make this sort of determination and deny a life saving medication to a child all because it cost too much.
I’m not sitting on my butt, not finding a job. I found one. I’ve been working for 3 weeks now. Sadly insurance won’t kick in for a few months. But working doesn’t mean I can pay that much. I make $2300 net income a month. Imagine paying $990 and then paying the nearly $700 for Kaylee to go to school and $690 for Annabelle. I wouldn’t even have enough to do that.
These programs are supposed to be there when you need the help. And I needed it and they denied my child. I’m not planning on using Medi-Cal long, hell I’m paying out of pocket most of the time for them to see the doctor anyhow. All I wanted was that safety net to cover her medications and they pulled it out from under us and that’s not right.
What happens when the money runs out? Does Medi-Cal believe that having a child in the hospital having her blood sugar maintained by a Dextrose Drip (IV) will be cheaper than just providing us the medication? Where’s the logic.
So I would like everyone to copy and paste this blog entry, or write your own email to my local representatives in the hopes that they will help us out. For anyone who wants to help me out please leave a comment that you would like to and leave a working email as well (I believe you can link it to your name).
I’ll send you my contact information so that you can put it in your email to our representatives.
Here are the folks we need to contact:

Senate
Strickland, Tony
http://cssrc.us/web/19/contact_me.aspx
Assembly Members
Smyth, Cameron
http://arc.asm.ca.gov/member/38/?p=email
Gorell, Jeff
http://arc.asm.ca.gov/member/37/?p=email

Thank you so much for any help you can give. I also have a letter written up if you would like to use it.
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So please, please help in any way you can. 

Thanks!