Kentucky’s Children Need Your Help – Senate Bill 18

Twice a day Katherine takes a compounded mixture of vitamins and supplements known as a “Mito cocktail.” Prescribed by her neurologist from the Cleveland Clinic, this cocktail has shown many positive results, including increased muscle tone, stamina, stability, and a lessened intention tremor. We hope it also is warding off the progressive cerebellar damage her condition can cause.

Mitochondrial diseases disproportionately affect children and can be life-shortening and debilitating. Mito cocktails can increase the lifespans and quality of life of these children. They are the only treatment currently available for mitochondrial diseases.

However, less than 10% of insurance carriers cover this needed medication. Our own carrier has denied us every time for various reasons, including the ridiculous insinuation that Katherine is using it for “cosmetic purposes and performance enhancement.” They currently refuse to cover it because she needs it compounded – she cannot swallow pills.

The monthly cost for Katherine’s Mito cocktail is $250. For others it is much higher, as it will be for Katherine as she grows and needed dosages are increased.

Dave and I decided to take this matter to the Kentucky House of Representatives with the hope that clarification of existing law would make right what insurance companies abundantly abuse. The unfortunate reality is that insurance companies manipulate policy language to their own benefit – all at the expense of medically fragile children and their economically struggling families.

With the support of Senate Bill 18 sponsor and doctor, Senator Ralph Alvarado, Representative Rita Smart added an amendment that would clarify existing law:

HFA2/HM( R. Smart ) – Amend KRS 304.17A-258 to specify that mitochondrial disease is an inborn error of metabolism or genetics to be treated by products defined as “therapeutic food, formulas, and supplements” and that health benefit plans that provide prescription drug coverage shall include in that coverage therapeutic food, formulas, supplements, and low-protein modified food products for the treatment of mitochondrial disease; specify that this act shall take effect January 1, 2017.

The House approved it 96-1 and sent it back to the Senate for committee approval.

We have been informed that Senator Alvarado and others worked tirelessly for two years on SB 18. And from public record, we know that prior to Representative Smart’s Mito Amendment, SB 18 passed the Senate (30-8). They refused to pass it with the amendment, sending it back to the House to remove it.

What changed? At this time we do not know for certain. The Senate said they would NOT pass SB 18 with this amendment attached to it – all at the expense of children with Mitochondrial Disease.

I applaud the Kentucky House of Representatives for standing up and saying no to removing this important amendment. It is now in conference, which means that either the House can agree to remove it, leaving our sick children uncovered, or the Senate can agree to the amendment, giving them coverage for the only medicine that exists for their condition.

Please stand with us and let our unified voices be heard: We will NOT go away quietly or without a fair fight – Katherine Belle and everybody else’s Katherine Belles DESERVE better. Contact your representatives in the Kentucky House and Senate to ensure passage of SB 18 with this important Mito Amendment attached to it.

  1. CLICK HERE TO FIND YOUR SENATOR BY COUNTY
  2. CLICK HERE TO FIND YOUR REPRESENTATIVE BY COUNTY
  3. You will be directed to your representative where you will see a blue link with their email address. Once you click on “email,” a form will appear where you can type your information and a message. You can copy and paste the following:I support Kentucky’s children. Do you? If so, I respectfully request that you pass SB 18 with Representative Rita Smart’s Amendment: HFA2/HM( R. Smart ) – Amend KRS 304.17A-258 to specify that mitochondrial disease is an inborn error of metabolism or genetics to be treated by products defined as “therapeutic food, formulas, and supplements” and that health benefit plans that provide prescription drug coverage shall include in that coverage therapeutic food, formulas, supplements, and low-protein modified food products for the treatment of mitochondrial disease; specify that this act shall take effect January 1, 2017. This amendment is important to me and the medically fragile families of Kentucky.
  4. Please share this post with your network and encourage them to do the same. The clock is ticking, so please help us spread the word as quickly as possible. Thank you! You are a part of positive change.

 

 

 

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