For this weekly feature, the Texas Council for Developmental Disabilities (TCDD) profiles a noteworthy bill that is currently going through the legislative process. The bill may relate directly to TCDD’s Public Policy Priorities or another disability-related issue.
Bill: House Bill (HB) 119, relating to the prohibition of organ transplant recipient discrimination on the basis of certain disabilities.
Bill Author: Rep. Brooks Landgraf, Texas House District 81 (Odessa)
- John Turner, Texas House District 114 (Dallas)
- James White, Texas House District 19 (Tyler)
- Justin Holland, Texas House District 33 (Rockwall)
What does the bill do?
HB 119 would ban organ transplant discrimination against people with disabilities. The bill would prohibit health care providers from, solely based on an individual’s disability:
- Determining an individual ineligible to receive an organ transplant
- Denying medical or other services related to an organ transplant, including evaluation, surgery, counseling, and postoperative treatment
- Refusing to refer the individual to a transplant center or other related specialist for evaluation or an organ transplant
- Refusing to place an individual on an organ transplant waitlist or placing the individual at a lower priority position than they would have been if not for the individual’s disability
- Declining insurance coverage for any procedure associated with the organ transplant, including post-transplant care
The above notwithstanding, a health care provider may consider an individual’s disability when the disability is determined medically significant to the organ transplant.
If the patient has the necessary support system to comply with post-transplant requirements, the health care provider may not consider an individual’s ability to comply as medically significant. Additionally, a health care provider must offer reasonable modifications on services, making them more accessible to an individual with a disability, unless it can be demonstrated that these modifications would fundamentally alter the nature of the service. These modifications may include:
- Communicating with those responsible for supporting an individual with postsurgical and post-transplant care, including medication
- Considering the support available to the individual—such as family, friends, or home and community-based services—when determining whether the individual can comply with post-transplant medical requirements
Under the terms of the bill, the health care provider will ensure that an individual is not denied services because of an absence of auxiliary aids and services unless it can be demonstrated that such aids and services would fundamentally alter the services provided or impose an undue burden on the health care provider. The bill also reiterates that a health care provider must comply with the requirements of Titles II (Public Services) and III (Public Accommodations) of the Americans with Disabilities Act (ADA).
This bill applies to each stage of the organ transplant process. A violation would be grounds for disciplinary action by the regulatory agency that issued a license, certificate, or other authority to a health care provider who committed the violation.
If passed, the bill would take effect Sept. 1, 2021, with any rules necessary for implementation to be adopted no later than Jan. 1, 2022.
Although organ transplant discrimination is illegal under the ADA, according to a study by Christopher Richards, Lavera Crawley, and David Magnus, 44% of organ transplant centers across the United States say they would not add a child with a neurodevelopmental disability to an organ transplant waitlist. Beyond that, 85% of centers might consider disability as a “weighted factor” when deciding whether a child should be added to the waitlist. In recent months, there has been a national push to ban organ transplant discrimination, with similar legislation being introduced in at least 8 states and at the federal level.
These efforts have been fueled, at least in part, by research from the National Council on Disability (NCD) who found that, among other things, discrimination continues to occur in the nine states with laws explicitly prohibiting such discrimination. Discrimination is founded on the misconception that people with disabilities are unable to handle the organ transplant treatment and, as there are currently around 100,000 people on the nationwide organ donation list with a 3-5 year wait time, those with disabilities are valued lower than those without. The NCD report indicates that the foundation of such discrimination is completely unwarranted, showing that “if a person has a disability that is unrelated to the reason a person needs an organ transplant, the disability will generally have little or no impact on the likelihood of the transplant being successful. If a person with a disability receives adequate support, the person’s disability should also have very limited impact on the ability to adhere to a post-transplant care regimen.”
Statement from the bill author, Rep. Brooks Landgraf:
“House Bill 119 seeks to ensure that no Texan is ever denied an organ transplant based solely on their disability. This idea was brought to me by a native West Texan who tragically lost her brother, Daniel, in 2015 after being denied a lifesaving organ transplant due to his disability. What happened to Daniel and his family was unacceptable and should never happen again in Texas.”
Where is the bill in the process?
On March 10, 2021, HB 119 received a public hearing before the House Committee on Public Health. You can watch the discussion on the bill here, beginning at the 33:20 mark.
On March 17, 2021, the bill was favorably reported by the Committee on a vote of 8-0. It now moves to the Calendars Committee, where it will await scheduling for consideration by the full Texas House.
Who supports the bill and why?
The following comments were taken from the March 10, 2021, public hearing of the House Committee on Public Health:
- Family Member: Kathleen Kirwan-Haynie shared her perspective as the sister of a patient who was denied an organ transplant: “There just isn’t a term for a sister who loses her brother. Her very special brother. I remember thinking, ‘Why can’t Daniel receive a kidney transplant?’ The doctor told my parents that this just isn’t something allowed for someone who has Down syndrome. I thought, ‘Isn’t this unethical?’ He was so healthy and so strong and so good. And other than his kidneys, he had no other health issues. Why couldn’t we even see if he was a candidate?… My brother suffered for nearly 20 years of his life from kidney disease. I know the quality of his life would have greatly improved had he had his fair chance at a transplant. And I believe he’d still be here today. I think about my brother every single day. And there isn’t a day that goes by that I don’t believe he should be standing with me. This law can’t bring him back, I know, but it can give other special individuals, like Daniel, a fighting chance at life and improve the quality of life that Daniel was denied.”
The following groups also registered their support for the legislation but provided no testimony: The Texas Catholic Conference of Bishops, the Texas Medical Association, the Mayor’s Office of the City of Houston, Donate Life Texas, and the Coalition of Texans with Disabilities.
Who opposes the bill and why?
No opposition to the bill was registered at the March 10 public hearing.
- TCDD: Linda Logan, Senior Policy Analyst for the TCDD, submitted written comments on the bill, recommending modifications to its language relating to supported decision-making that would bring it more in line with current Texas law. She suggested additional minor changes for clarity.
Though TCDD takes no formal position on HB 119, the Council lists the topic of Health and Safety among its 2021 Public Policy Priorities. That priority reads as follows:
Ensure Texans with disabilities have equal access to and are proactively included in using all community resources designed to maintain and improve individual and public health and safety, including during public health emergencies. Texans with disabilities deserve health care that is available, accessible, and affordable, as well as emergency planning that is responsive to their needs.
How much will the bill cost?
The Legislative Budget Board (LBB) determined the bill would not increase the state’s budget in a significant way.
Is there a Senate companion to the bill?
Sen. Judith Zaffirini has filed Senate Bill (SB) 1017, an identical Senate companion to HB 119.
Rep. James White has filed HB 473, a House Bill nearly identical to HB 119. Rep. White is a Joint Author of HB 119.
For the latest information about where HB 119 is in the process, follow the bill on the Texas Legislature Online. To receive future legislative updates from TCDD, subscribe to TCDD eNews or follow us on Twitter.