Mattie's Policy- Medicine For Mattie, for ALL.

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Attention: I'm doing this for my friend and the future of our health care. Jaclyn White.

We have a victory for Mattie. Now, can we please keep this going to make changes for all who are in need of medicine. 

Let's make a change in policy, by signing this petition. Don't allow someone behind a desk make decisions on your life!! 

Doctors need to have the final say and what is best for their patience. Please share.... Something has to give. No more taking whatever is handed to us.

You PAY for insurance and yet we allow them to dictate what they will cover.

Stop this kind of abuse of power from Insurance and pharmaceutical companies! 

Mattie's Policy- for ALL with and without insurance, that need treatment for their life. 

 Dear Anyone Who Can Help,

I am writing you on behalf of my 9 year old son Matthew. We call him Mattie, and we live in Newnan, GA. 

He is a smart, funny, stubborn, bright young man who loves playing video games, feeding and caring for his chickens, and helping his family. 

Mattie had a 2nd surgery to remove a dangerous spinal cord tumor from his spine at C3-C4 that was compressing his spinal cord.

Unfortunately, Mattie suffered a spinal injury during surgery. He also had issues with his heart rate and blood pressure after surgery that put him in the intensive care unit at Children’s Healthcare of Atlanta at Scottish Rite.

They stopped the surgery and were unable to remove all of the tumor. At that point keeping Mattie alive took priority over removing all of the tumor.

Since then, he has had to undergo intensive rehabilitation at Children's Healthcare of Atlanta. He was unable to walk, move his left arm, or feed himself after surgery. 

Thanks to the Rehabilitation program at Children's Healthcare of Atlanta, he is able to walk short distances and is gaining back his endurance. However, his arm is still paralyzed at the shoulder.

As proud as we are of our son, his battle is unfortunately not over. His team of experienced doctors want him to try an oral chemotherapy called Mekinist in order to attempt to shrink the tumor. However, the FDA has only approved it for melanoma. 

They want to do something called using this medication off label. There are no other chemotherapies available on the market that will help him.

Because of the FDA labeling, our insurances will not approve the medication. His doctors are doing all they can to help him get the medication. 

Matthew has UnitedHealthcare as his primary insurance, CVS Pharmacy (Caremark) as his prescription coverage, and Georgia Katie Beckett Deeming Waiver Medicaid (Georgia Department of Community Health) as secondary insurance. 

The drug manufacture Novartis, is denying him patient assistance because he has insurance. 

The medication costs are 1/10 of the cost of what it will incur for the costs of his surgeries and rehabilitation. 

It's more cost effective and logical for Mattie to try this medication. If it shrinks these tumors, he will be able to grow up and become a productive, tax paying adult. 

If these tumors keep growing, he will become a ventilator dependent quadriplegic. 

The cost to the state of GA and federal government for his long term care will be astronomical. 

It's in everyone's economic best interest to try to help Mattie get access to this life saving and tumor shrinking medication.

Also, the cold facts are, that if he has more surgeries, he is likely to suffer more spinal injuries and quite possibly not survive. I am begging you as his mom to help. 

If you can help influence anyone to approve this medication for my baby, I would be forever grateful. 

You have the power to help him if you so choose. His life, future, ability to walk and grow up, are literally in your hands. Please help us. You could quite possibly be his only hope.

All I want for Christmas is for my baby to get a chance at being able to use this medicine.

Respectfully,
Katie McKoy 



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