Get Help from a Family Connector

“Children with intellectual and developmental disabilities have historically been excluded as potential recipients of organ transplants. When a transplant is likely to provide significant health benefits, denying a transplant to otherwise eligible children with disabilities may constitute illegal and unjustified discrimination. Children with intellectual and developmental disabilities should not be excluded from the potential pool of recipients and should be referred for evaluation as recipients of solid organ transplants.”

- American Academy of Pediatrics Publication, May 2020

Jonny’s Law, a bill that will eliminate organ transplant discrimination for individuals with disabilities, is in motion at the Minnesota State Capitol.

It’s been a busy first quarter here at DSAMN! The Advocacy and Public Policy Committee here at DSAMN lead by chair Gina Schmittdiel, has been working with the leads on this bill; DSAMN members Erica Hillyer and Amanda Collins to make Jonny’s Law a reality for all Minnesotans. We would like to pass along an exciting update about Jonny’s Law, a bill that will eliminate organ transplant discrimination for individuals with disabilities.

“As Jonny's mom, the idea that he might be denied an organ transplant if he ever needed one simply because of an extra chromosome and someone else’s preconceived idea of what that means for his life is a tragedy. Anyone who meets Jonny would tell you he is absolutely worthy of life. And yet, it happens. Around the country and here in Minnesota, people with disabilities are still being denied life-saving organ transplants, are being placed lower on the wait-list, or aren’t even being referred in the first place simply because of their disability—not because they aren’t medically qualified.”

-Erica, Mom to Jonny

Amanda Collin's son Peter.

Here are the current updates on this law and where they are sitting at the State Capitol:

SF 875/HF 1080 recently passed unanimously through two committee hearings in the House of Representatives and has been sent to the House floor. In the Senate it has already passed unanimously through committees and will be included within the Health and Human Services omnibus bill vote.

SF 875/HF 1080 will ensure that medically eligible patients in Minnesota who have cognitive, developmental, intellectual, neurological, or physical disability(ies) are never discriminated against when seeking an organ transplant. This bill will also prohibit health plans from denying insurance coverage for transplant-related care based on a disability. And, if an eligible patient is discriminated against in the organ transplant process, they can file a civil action and have that claim heard quickly and efficiently to reach a resolution.

If you have not already done this, please take one minute and use this link to contact your state legislators. All you have to do is enter your address and it will email your senator and representative asking for their support of Jonny’s Law.

You can access the form Here

Please share and encourage others to contact their legislators, as well. You are making a difference and we appreciate you!

DSAMN Advocacy and Public Policy Committee

Gina Schmittdiel, Committee Chair -