I got a phone call from someone representing the Ryan Dant bill, HR-5748. She is heading to Washington this week to meet with a congressman about getting this bill moved forward. “H.R. 5748 would amend title XIX of the Social Security Act to permit States to exclude earned income in determining eligibility for medical assistance for individuals with extremely high prescription drug costs.”
This bill will directly affect Hannah in so many respects. With the laws the way they are now, if Hannah is able to get insurance coverage when she is an adult and she hits the maximum cap, then she would have to apply for medicaid for her life-saving bi-weekly treatments. In order to qualify for medicaid, her income has to be below a certain level. This means that Hannah would not have the opportunity to strive for the job of her dreams; instead, she would have to resign herself to a low-paying job in order just to have her medical treatments. How do I tell my daughter that her brother and sister can strive for any job in the world, but you have to resign yourself to the fact that you can’t have a “dream job” and instead will have to take a low-paying job for the rest of your life just to save your life?
H.R. 5748 provides an alternative to individuals facing a similar situation, by allowing a Medicaid state option that would permit individuals to be released from the qualifying earnings restrictions. This legislation would apply only to individuals who pay more than $250,000.00 per year in prescription drug costs and have exhausted at least $1,000,000.00 in private insurance coverage. (NGF)
I was asked to write a 3 to 4 paragraph letter to the congressman this evening sharing our story to be presented at this meeting. I was also asked that if requested, would I consider testifying in congress about our personal situation with Hannah. Absolutely, unequivocally, without a hesitate, hell yes I would!! I will admit, there is the selfish part of me that would be so proud to be able to truly be able to fight first hand for Hannah to have a better future.
I’m going to work on that now, and I will post it in the morning to share.
This bill would give Hannah the chance to dream to become anything she wants to be. How can I not do everything and anything I can to give her that opportunity?
Very nice blog! and Hannah is sooo beautiful!!! Much blessings to her.
My friend Mark Dant is in Washington this week to meet up with some of the committee members that are instrumental in getting this H.R. passed. I have watched his son Ryan grow up from when he was born and he has accomplished so much and has so much going for him that it truly is a shame that his job aspirations are dictated by a set of rules that definitely need to be changed. If I had a son I would want him to be exactly like Ryan. He is a great young man. His Dad, Mark, is a top notch guy too and truly is my HERO. In the past my friends and I have contacted our local respective politicians and had every one in their email groups send them letters expressing how much we need changes that deal with this. God Bless you and your child. Sincerely, B.K.
I think you are already “directly” impacting Hannah’s cause, just by writing this informative blog. This site is so much more than a “meet Hannah and learn about her site” it is full of information on her disease, advice (through example) on how to push for a diagnosis, and again, through example, how to get treatment for your child and just keep pushing forward.