GRAND RAPIDS, Mich. (WOOD) — A West Michigan mom is rewriting the rules when it comes to the state’s organ donation process, inspiring legislation banning discrimination based on disability.

An undated courtesy photo of Lindsay Filcik and her newborn daughter Ivy.

Lindsay Filcik’s 3-year-old daughter Ivy was born with Down syndrome.

“When Ivy was born, it really changed my world quite a bit and opened my eyes to a lot of the discrimination that happens for people with disabilities,” Filcik said.

By the time Ivy was 1, Filcik discovered her daughter could even be discriminated against during the organ transplant process.

After doing some digging, Filcik learned individuals with a physical or intellectual disability have been denied a spot on a transplant list because of their disability. She said people have also received lower priority on a transplant waitlist based on their disability.

“It really hurt knowing that there were people that would find (Ivy’s) life not worthy of saving if she were ever in need of an organ transplant,” Filcik said. “I have two typical children and to know that their lives may be categorized differently than hers is just not OK.”

An undated courtesy photo of the Filcik family. (Lindsay Filcik)

Filcik says some health care professionals have defended the move, believing that people with a disability may have trouble following post-transplant care instructions or lack the support to do so, potentially wasting the donation.

But for the parents of a kid with a disability, there’s no excuse.

Cyndi Peters of Grand Rapids also has a son with Down syndrome.

An undated photo of Cyndi Peters’ son Kale.

Peters joined Filcik in advocating for change, wanting to know why Michigan hasn’t done more to protect those with a disability.

“There’s like 12 or 13 states that already have this legislation on the books, and so I was just confused why doesn’t every state have this?” Peters said.

Though the federal Americans with Disabilities Act of 1990 bans discrimination during the transplant process, the National Down Syndrome Society says people with disabilities still don’t receive equal consideration for organ transplants.

With the help of the NDSS as well as state lawmakers, the moms helped craft House Bill 4762, outlawing the denial of a transplant or lowering a person’s place on a transplant waitlist based on a physical or intellectual disability.

The state House passed the bill last week with overwhelming support. They also approved another piece of legislation that would allow HIV patients to donate their organs to HIV-positive recipients.

Both bills must be passed by the Senate and signed by the governor to become law.


Sunday will be National HIV Testing Day.

The Kent County Health Department has teamed up with the Grand Rapids Red Project to provide free HIV testing and education. They’ll be hosting a clinic Thursday from 2 p.m. to 6 p.m. in the parking lot across from the Sheldon Complex on 121 Franklin Street SE.

The health department says it offers free HIV and STI testing five days a week at its building at 700 Fuller Avenue.