This is my Son Brody. He has a Rare Chromosome Disorder;
20q13.33 Deletion, UPD of Chromosome 1, and Oppositional Defiant Disorder.
I don't usually talk about his struggles, Drs. appointments medicines and therapies because it's a private part of our family's life. But I can't ignore this platform in front of me if it can be used for good to help my Son. I'm his Mother and biggest advocate for his health, so you can imagine how frustrating it is for me to watch our Government debate over signing a new Health Care Bill that affects his care and rights to coverage for a pre-existing condition.
The Senate is currently considering the "Graham-Cassidy" bill in another effort to replace the Affordable Care Act (ACA). If enacted, the bill will harm rare disease patients by cutting hundreds of billions of dollars from Medicaid, and removing key pre-existing condition protections.
Under "Graham-Cassidy," federal funding for Medicaid would be substantially weakened by per capita caps and block grants, resulting in your state potentially delaying or outright refusing coverage for necessary care under Medicaid. Rare disease patients seeking expanded Medicaid coverage would also be turned away after 2019.
If the Bill passed, it would leave rare disease patients with wholly inadequate coverage, bring back annual and lifetime limits for children and adults with rare diseases, and remove any protections against bankrupting out-of-pocket costs. It would also once again allow insurers to charge premiums based upon the health status of an individual. This practice is incredibly discriminatory, and would result in many, if not most, individuals with rare diseases being completely priced out of the private insurance market. The "Graham-Cassidy" bill would be devastating for individuals with rare diseases.
Politics aside, I firmly believe no child should be without a voice. My Sons condition is rare and he is currently the only child in Utah with his specific Chromosome Disorder. I'm sure someday i'll share our story and how we are coping with his diagnosis, but until then I can not stay silent. This topic means too much to me and I can not sit back and let the whims of Politicians drive change. This Country is too beautiful and unique to let millions of children and adults suffer lack of coverage for basic Health Care needs. Regardless of whether or not your child has a pre-existing condition, we must come together as parents, friends, and members of our communities to support children of all needs.
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