Everyone Should Be Eligible for Organ Transplants (by Julie Ayers)

Sierra as a child during a hospitalization. [image description: A young white girl with short black curly hair stands holding onto an IV pole mounted with various medical devices. She wears a black pajama shirt and pink patterned pajama bottoms.]

“Fortunately, your daughter will still be eligible for a kidney transplant even though she has developmental disabilities,” the doctor said.

I sat there stunned. It had never occurred to me that my daughter’s intellectual disabilities could be a reason to deny her the lifesaving kidney transplant she needed.

Sierra was nicknamed “The Mayor” at her middle school because my tiny daughter has a big personality and always knows what should be happening and who should be where, and is not shy about sharing that information. She confounds doctors who review her medical records and labs and, based on that, expect to see a very sick girl when they walk into the room and instead find this energetic person who is living large and loving life. 

My spunky, loving, sweet daughter Sierra was born with a rare genetic condition called cystinosis which causes progressive damage to organs and tissue throughout her body. Only 500 people in the United States have cystinosis. After presenting with failure to thrive as an infant and seeing numerous specialists and undergoing every diagnostic test you can imagine, she was diagnosed with cystinosis, developmental disabilities, and verbal apraxia which means she has difficulty forming words. Cystinosis eventually leads to kidney failure, and Sierra’s kidneys began to fail when she was about four years old. 

People diagnosed with cystinosis did not usually survive beyond age 10 before kidney transplants became possible. Kidney transplants were a game changer for the cystinosis community, meaning children had a future. Not just a future, but a bright future in which they could have a good quality of life and live a more typical life span. 

As our family struggled to digest and adapt to the reality of our beloved Sierra having this chronic disease, we were mortified, terrified, sickened, and angry at the thought that her intellectual disabilities would ever be used as a reason to deny her any type of medical care, especially a lifesaving organ transplant. 

Sierra today. [image description: A young white woman with long curly blonde hair is seated outdoors. She wears a scoop-neck burgundy top and a burgundy and black checked skirt.]

Sierra, who is now 25 years old, loves to sing and dance, attend concerts, take care of people, volunteer in the community, and gives the best hugs, has survived cystinosis, a kidney transplant at age 6, lymphoma at age 10, a second round of kidney failure caused by the cancer treatment, a year of dialysis, heart failure, a second kidney transplant at age 12, and most recently, a stroke. Yet she comes through it all and continues to carry a spark that ignites joy in everyone she meets. Sierra is love on legs. 

Our family got lucky in that we have been working with an institution that did not include developmental and intellectual disabilities as part of their criteria to determine who would and would not be eligible for organ donation. 

But it shouldn’t be about luck. Sierra’s worth should not be measured by her IQ. She is invaluable.

We need to make sure all the Sierras out there are protected and able to get the organ transplants they need to preserve their valuable and precious lives. U.S. Representatives Jaime Herrera Beutler (D-WA) and Katie Porter (D-CA) have recently reintroduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R.1235), “which will prohibit using an individual’s mental or physical disability as the sole basis of determining their eligibility for an organ transplant.” 

While 13 U.S. states have passed legislation forbidding discrimination in organ transplant surgery on the basis of disability, bias persist. H.R. 1235 would ensure that disabled people in the remaining 37 states can have their health needs met without fear. In December 2020, the American Academy of Pediatrics issued a policy statement warning physicians and hospitals that denying transplants to people with disabilities could be both discriminatory and illegal.

You can help protect people with disabilities like Sierra by emailing or phoning your U.S. House and Senate representatives directly to support H.R. 1235. You may also call the U.S. Capitol Switchboard at (202) 224-3121 and ask to be connected to a particular office. 

If you or someone you love has encountered discrimination in obtaining an organ transplant because of a disability, please share your story with Little Lobbyists! 

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Julie Ayers is is the Service-Learning Specialist for the Maryland State Department of Education where she oversees Maryland’s ground breaking service-learning graduation requirement. She’s taught at the Florida Institute of Technology and been an adjunct instructor at Loyola College of Maryland. She has also worked in the Maryland non-profit poverty solutions sector and was responsible for developing the Kids Helping Kids anti-hunger curriculum. Julie has created many publications supporting, and several articles on, Maryland’s service-learning program. But most importantly, she is mother to two wonderful humans, Sierra and Sawyer.