Did you know that adults and children alike all over the United States are being denied eligibility for organ transplants? Was it because they couldn’t pay for it, insurance didn’t cover it, or they didn’t meet the requirements? No, these beautiful people are being denied because they have disabilities. They have disabilities such as Down Syndrome and Autism. Doctors have been deciding that these people didn’t have enough quality of life to be worth providing an organ transplant to. In fact, “a 2008 survey of organ transplant centers found that 85% consider neurodevelopmental status as a factor in determining eligibility” (Organ Transplant). I have no words.
Families have been fighting back against this blatant discrimination since there is no specific law covering this type of in-equity. While the Americans With Disabilities Act does provide a lot of protection against discrimination in other ways, there are no laws at all against denying organ transplants to people with disabilities. There is so much stigma in this world today, that it saddens my heart to hear that people are being denied because of having a disability. Who says anyone is more important or valuable than anyone else?
There are several states that are beginning to make a change to stop this discrimination due to the petitions of individuals. Pennsylvania, Oregon, Maryland, California, New Jersey, Massachusetts, Kansas, and Delaware have all passed laws outlawing this practice of denying organ transplants to individuals with disabilities. Ohio has been in the process of passing a related Bill through the Senate beginning in 2017. This leaves 41 states, or 82% of the country left, where this discrimination is still legal. Can you imagine that? Just 18% of the United States are choosing to fight against this. Louisiana, however, is the newest state to have a similar bill proposed.
Here is the story behind how Louisiana entered the fight. Meet Evangeline Love (Evie for short) an almost two year old, sweet little girl, with Down Syndrome. Evie was born with a congenital heart defect causing two holes in her heart. While one hole has closed on it’s own, Evie still needs to be monitored closely. Her mom, knowing that there might be a small risk of surgery in the future, was concerned about the news that she had been hearing. News that children, whatever their disability, are being denied eligibility for organ transplants. If the time ever came in their daughter’s life that she needed a transplant, her mother didn’t want someone to say that Evie wasn’t worthy enough to receive care.
In light of this, the family took action, petitioning the state of Louisiana and proposing a bill that highlighted the injustice against individuals with disabilities. They believe, as do I, that no one should be discriminated against because of a physical or intellectual disability. Their whole purpose behind making a change was to protect Evie and anyone else who needed, or may need an organ transplant in the future. The family is being sponsored by Representative Malinda White, a firm advocate of the proposed Bill and someone who also has connections in the disability community. She not only is sponsoring the Bill, but is also including every proposed clause recommended from the family, with the bonus addition of 2 more.
This new Bill called Louisiana House Bill Number 143, is also otherwise known as Evie’s Law. It states in section 4A of the Bill proposal that, “The legislature declares that the life of a person with a disability who needs an organ transplant is as worthy and valuable as the life of a person with no disability who needs the same medical service.” This Bill is not a law, currently. According to Evie’s mom, it still needs to get the approval of two House committees, a majority House vote, the approval of two Senate committees, and a majority Senate vote to become a law. If passed, Evie’s Law will make the discrimination of those with disabilities in the organ transplant system, illegal in Louisiana. This would make a total of 20% of the U.S fighting against this horrific discrimination.
It was appalling for me to find out that this type of discrimination was going on. This country was founded on the truths that everyone is equal to one another. As it states in the Declaration of Independence, we hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness (US 1776). That is what I believe. How did we, as a country, stray so far away from the original purpose of creating this country in the first place? This country was created as a place of freedom from judgment, so how are we falling back into doing the opposite of why this country was founded?
The final Bill proposal was signed in to be processed by the legal system of Louisiana in late March of this year. While this is just the beginning of a long journey to come, I for sure, know that there is much support behind Evie’s Law. A huge congratulations to Evie and her family is in order! I hope the states continue to follow the example set by others. Let this story of strength of one family be a place of inspiration for others to start similar campaigns. My hope is for the day when everyone can see each other as an equal. I will continue to work for that goal, for every little bit helps.
Thank you for reading this important article! What are your thoughts on the discrimination that individuals with disabilities are receiving? Have you been discriminated against whilst in the organ donor transplant system? A big thank you to @extraevielove from Instagram, for allowing me to use personal pictures of Evie and their family in this article. Please subscribe and I’ll see you next time my Un-imaginables! I’ll leave you with this verse, “Therefore welcome one another as Christ has welcomed you, for the glory of God” (English Standard Version, Romans 15:7).
“10 Symptoms of Down Syndrome.” Facty Health, 13 Dec. 2018, health.facty.com/conditions/down-syndrome/10-symptoms-of-down-syndrome/4/.
“Congenital Heart Defects – Facts about Atrioventricular Septal Defect | CDC.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, http://www.cdc.gov/ncbddd/heartdefects/avsd.html.
Courtney, et al. “Ending Organ Transplantation Discrimination – Inclusion Evolution.” Inclusion Evolution, 17 Oct. 2017, http://www.inclusionevolution.com/organ-transplant-waitlist-discrimination/.“ESV: Study Bible: English Standard Version.”
ESV: Study Bible: English Standard Version, Crossway Bibles, 2016.
“Evie’s Law Update.” Instagram, Extraevielove, 25 Mar. 2019, http://www.instagram.com/p/Bvc76Pqn6Yq/.
Hansen, Courtney. “Ending Organ Transplant Discrimination Against Kids With Disabilities.” The Mighty, 2 Apr. 2019, themighty.com/2018/02/organ-transplant-discrimination-kids-with-disabilities/.
Leonard, H, et al. “Heart and Heart-Lung Transplantation in Down’s Syndrome. The Lack of Supportive Evidence Means Each Case Must Be Carefully Assessed.” BMJ (Clinical Research Ed.), British Medical Journal, 25 Mar. 2000, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1127180/.
“Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps .” Autistic Self Advocacy Network, Mar. 2013, autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3.18.13.pdf.