Charlotte Woodward Organ Transplant Discrimination Prevention Act

Floor Speech

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Mrs. CAMMACK. Mr. Speaker, I thank my colleague, Representative Bucshon, for yielding me time.

Mr. Speaker, it is an honor to stand here today and debate H.R. 2706, the Charlotte Woodward Organ Transplant Discrimination Prevention Act. Of course, I don't think there is a whole lot of debate that is going to happen here today because I hope it will be unanimous.

For Members who don't know, this bill is named after Charlotte Woodward, an adult woman with Down syndrome who received a lifesaving heart transplant over 12 years ago.

Sadly, as has been mentioned, not all individuals with disabilities have that same opportunity. That is why we are here to consider this bill today, to ensure that all Americans, regardless of the disability they may have, have the same opportunity to receive a lifesaving organ transplant.

When I first learned of this issue, I could not believe that this practice was happening here in our country. However, after learning more about the issue and hearing stories from advocates, including Charlotte herself, they were advocating for change. I was shocked and horrified to learn that there were no protections for these individuals.

According to a 2019 report from the National Council on Disability, which is the agency that advises the legislative and executive branch on disability policy issues, people with disabilities have been routinely denied due to subjective judgments about the value of a human who happens to have a disability, subjective assumptions about their quality of life, and misconceptions about their ability to comply with postoperative care.

Even more, that same report found that some organ transplant programs have policies that exclude, rather than include, people with disabilities as candidates for transplant.

In 2021, as a freshman Member of Congress, I met Bobbi and Josh Sarmiento. They are from Ocala, Florida, in my district. These constituents reached out and wanted to share the story of their son, baby Zion. I spent time learning about their journey and couldn't help being moved to action as I left them that day.

I couldn't possibly do justice in recounting their story. Instead, I will read an excerpt from baby Zion's mom, Bobbi, in her own words, their story and experience with the organ transplant system that she provided to a congressional panel just last year.

In Bobbi's words, she said:

We learned at 10 weeks gestation that our son, Zion, had Down syndrome, and at his 20-week anatomy scan, he had a heart defect called a complete AVSD, or also called a complete AV canal defect. Simply put, we have four chambers in our heart. Zion had a large hole in the center separating those chambers from forming. This is a common heart defect those with Down syndrome have.

Our beautiful boy was born on June 15, 2021. We spent 40 days in the NICU before being discharged to go home. We have some of the best memories of our time at home before his open-heart surgery was scheduled for September of 2021. We did all the research and asked all the questions. We never knew we would end up being the worst-case scenario.

To make a long story short, Zion had 5 open-heart surgeries in a matter of 12 days. He was such a warrior through each one. After the fifth surgery didn't work as planned, we were told that he would need a heart transplant. The hospital we were at did not do transplants, so we were left with three options in Florida. To qualify, we were told his other organs had to be working, which they were, and we have the autopsy to prove this.

Our first option told us that they had never done a successful heart transplant on someone with Down syndrome. I asked how many they had tried. No response. Through my own research and digging that moms do to get answers, I have since learned that the answer was zero. Our second option said that they didn't feel their team could do a successful heart transplant for Zion, and the third option kept us waiting.

Finally, they came back and said that, because baby Zion was on ECMO life support three times through the five surgeries, he couldn't have brain activity. I would like to note that Zion came off ECMO after the second and fifth surgery, which we knew upfront was vital to being accepted for the heart transplant list. They wanted a brain activity test run and sent to them for their final decision. We were told before it was sent that the test was perfect.

With nothing to disqualify him, we thought that we would be on our way to the next step. They came back and told us that after much deliberation, they concluded that they just couldn't waste a heart.

Wow, that is hard to read.

Our son was worth the same chance at life as anyone else. With no options left, we had to make the decision to remove the machines. On October 8, 2021, our son left our arms and ran into the arms of Jesus.

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Mrs. CAMMACK. Baby Zion deserved the same chance at life as any other American, but he was denied a heart transplant by the same doctors because he had Down syndrome, and they ``couldn't waste a heart.''

The tragic story of baby Zion and the courage of his parents, Josh and Bobbi, along with the drive of so many incredible advocates, have led us today to H.R. 2706, the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which would prohibit healthcare providers and other entities from denying or restricting an individual's access to organ transplants solely based on an individual's disability.

The bill would require expedited review of discrimination claims at the Office for Civil Rights at the Department of Health and Human Services. No family should have to wait or be denied.

I thank Charlotte Woodward, Bobbi and Josh, and all of the advocates who have worked so hard to get this bill where it is today. We would not be here without your tireless work to educate and advocate on behalf of individuals with disabilities across the country.

I also want to thank my colleague, Debbie Dingell, for her partnership and work on this bill. It was truly an honor to work with the gentlewoman on important issues like this.

I also acknowledge my Senate counterpart, Senator Rubio, for championing this issue in the Senate.

Lastly, I thank Chair Cathy McMorris Rodgers for her work and support on this issue. Her leadership in Energy and Commerce on this issue and the multitude of important issues that we deal with in the committee cannot be overstated. Not only is the gentlewoman a trailblazer and an ability advocate, but a force of nature.

Mr. Speaker, I urge my colleagues to support this bill.

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