Bipartisan Senate Bill Prevents Organ Transplant Discrimination for People With Disabilities

Published December 8, 2021

Senators Maggie Hassan (D-NH) and Marco Rubio (R-FL) recently introduced a bill that would prevent discrimination against people with disabilities when it comes to organ transplants. The Charlotte Woodward Organ Transplant Discrimination Prevention Act (S.3301) was introduced on December 2, 2021, while members of the House of Representatives presented companion legislation earlier this year (H.R. 1235).

Currently, 25 states prohibit organ transplantation discrimination, but enforcement is difficult because of discrepancies in the laws. By setting a federal mandate, the legislation would create a baseline for every state to follow and for every surgeon to operate under. It would also expedite discrimination cases that made it to federal courts.

For many disability advocates, this bill was a long time coming, but it still has a long way to go. Learn more about organ transplant discrimination against the disabled community and how this bill could reduce it.

Organ transplant presented as a commerce issue

If you read the text of the bill, you will find that the authors cite existing anti-discrimination laws as the basis for the addendum. They use the Americans with Disabilities Act of 1990 and section 504 of the Rehabilitation Act of 1973 to draft this proposed legislation.

The case that Hassan and Rubio make is that organ transplants are a commerce issue, and discrimination against people with disabilities is specifically a federal issue because it affects interstate commerce.

“Licensed providers of health care services that provide organ transplants and related services in exchange for medical fees are engaging in an economic transaction with patients that occurs in or substantially impacts interstate commerce,” they write.

There are 11 regions in the United States for the national administration of organ allocation. In many cases, organs are transported across state lines for patients. Essentially, an organ that is donated in California might get sent to Arizona or Nevada. The case the senators are making is that doctors who discriminate against disabled patients are disrupting the flow of commerce and damaging the federal economy as a whole.

The law ties economic values to discrimination to justify making a federal issue as opposed to a problem that could be resolved on the state level.

Charlotte Woodward - the advocate behind the bill

The introduction of this legislation has been a long time coming for Charlotte Woodward, the activist who the bill is named after. Woodward went viral in a video posted on TikTok last summer. The video, called, Things About Having Down Syndrome that Don’t Make Sense, mentions how Woodward can be denied an organ transplant because of developmental or intellectual disabilities.

When she was 22 years old, Woodward was told she needed a heart transplant. She was born with an atrioventricular heart defect that includes holes in the wall between chambers and flawed valves. Woodward experienced fainting spells, low energy, and shortness of breath as the condition got worse. When her doctors put her on the transplant list, they found a donor in eleven days and she had the operation.

However, Woodward is speaking out for people with down syndrome who haven’t had the same care that she has.

"Many people with Down syndrome in society aren't considered to be candidates for an organ transplant, and that begs the question, whose lives are valuable?" she asks.

Currently, Woodward works as a Community Outreach Advocate for the National Down Syndrome Society (NDSS) while working toward a degree in sociology at George Mason University. Her advocacy work led to the creation of this bill and similar legislation in the House.

How is this discrimination justified?

Woodward’s concerns about getting a heart transplant are very real, as many doctors continue to voice concerns about approving people with disabilities. In 2021, how can this behavior be justified?

The National Council on Disability created a report in 2019 that highlighted why doctors continue to deny patients with disabilities care. A few reasons include:

  • They are concerned that people with intellectual and developmental disabilities (I/DD) and mental health disabilities will be unable to comply with necessary postoperative care.
  • The person’s disability might impact the medical likelihood of transplant success, such as the graft or patient survival rate.
  • The patient is more likely to have co-occurring conditions that would make a transplant dangerous.
  • The patient’s quality of life is unlikely to improve with a transplant.

The doctors who discriminate against people with disabilities often use the scarcity of organs as a driver for denial. There are currently 106,810 Americans waiting for organs and 17 people die every day waiting for organ transplant approval. By denying patients with disabilities the chance for surgery, the doctors think they are prioritizing patients with a high chance of transplant success. In reality, they are choosing the patients who they think are worthy of healthy organs.

None of the concerns for denying patients organs are proven true

The report for the NCD found that none of the above reasons for discrimination are valid. In fact, many of the reasons for denying treatment highlight negative assumptions and beliefs about people with disabilities. They present the idea that people with disabilities are sickly or unable to care for themselves. They present people with disabilities as having a lower quality of life – and therefore being less deserving of care.

“While there is no broad consensus, most individuals interviewed for this report believe that organs should be allocated purely on the basis of medical necessity, rather than a subjective analysis of the individual’s quality of life before or after the transplant.”

Essentially, this report backs what countless people with disabilities, advocates, and allies have been saying for years. Denying an organ transplant because of a disability is pure discrimination.

The bill that Hassan and Rubio presented, the Charlotte Woodward Law, would prevent doctors from continuing to deny care. It would also give patients with disabilities and their families the foundation to seek justice for discrimination in the courts.

Learn more and take action

To learn more about the ADA and other laws that are created to protect people with disabilities, visit our Rules and Regulations page. This is a good jumping-off point for both state and federal laws.

If you support this bill or want to make your voice heard on this legislation or another issue, contact your senator or representative. You can learn who to contact on GovTrack. This website will help you find elected officials, share their contact information, and will even provide a script that you can use related to this legislation – whether you support or oppose it.

 

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