From: The Honorable Michael M. Honda
Sent By:
helen.beaudreau@mail.house.gov

Date: 9/26/2016

End Organ Transplant Discrimination Against Persons with Disabilities

Supported by: Autistic Self Advocacy Network
and the National Down Syndrome Society

Deadline:
COB Wednesday 9/28

Dear Colleague:

I invite you to join me in urging the Department of Health and Human Services’ Office of Civil Rights to issue guidance on organ transplant discrimination with regards to persons with disabilities. People
with an intellectual and/or developmental disability must not be denied life-saving organ transplants for no reason other than their disability.

In recent years, several states across the country, including California, Maryland, and New Jersey, have passed laws banning organ transplant discrimination. These laws prohibit the discrimination against
a potential recipient of any organ transplant solely on the basis of an individual’s disability, as defined in the Americans with Disability Act of 1990. Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant
registries and transplantation surgery to qualified people with disabilities. 

Furthermore, health providers deny transplants to qualified people with disabilities due to concerns the transplantation will not be successful – without taking into consideration the patient’s support
network and services. Studies show that people with disabilities who used a support system to assist with postoperative care have been no less likely to have a successful transplant that people without disabilities.

Join me in urging HHS OCR to stop organ transplant discrimination by setting clear, explicit guidelines in organ transplantation. No one should be denied their right to life simply because of their intellectual
and/or development disabilities.

To sign on or for any questions, please contact Helen Beaudreau (x52361) at

helen.beaudreau@mail.house.gov
.

Sincerely,

/s

Michael M. Honda
Member of Congress

***********

September xx, 2016
Ms. Jocelyn Samuels
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Dear Ms. Samuels: 

We write to strongly urge the Department of Health and Human Services’ Office of Civil Rights (HHS OCR) to issue guidance on organ transplant discrimination with regards to persons with disabilities.
People with an intellectual and/or developmental disability must not be denied life-saving organ transplants for no reason other than their disability.

In recent years, several states across the country, including California, Maryland, and New Jersey, have passed laws banning organ transplant discrimination. These laws prohibit the discrimination against
a potential recipient of any organ transplant solely on the basis of an individual’s disability, as defined in the Americans with Disability Act of 1990. Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant
registries and transplantation surgery to qualified people with disabilities. 

In fact, data illustrates that discrimination against people with disability in access to organ transplants does exist and is persistent. For instance, a 2008 survey of 88 transplant centers found that
85 percent of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility at least some of the time. 71 percent of heart programs surveyed also applied neurodevelopmental status in determining
transplant eligibility. During a 2012 case involving a young Autistic adult seeking and being denied access to a heart transplant, Dr. Arthur Caplan, the Director of Medical Ethics for New York University’s Langone Medical Center, wrote in a Medscape editorial,
“If the potential recipient is severely intellectually impaired…I do not think it makes sense to consider that child for a transplant either.”

Sadly, donated organs remain a limited resource. As a result, health providers can deny access to an organ transplantation when there is a genuine concern that the transplantation will not be successful.
Therefore, many providers also deny transplants to qualified people with disabilities due to concerns that the potential patient cannot comply with complex postoperative medical regimens without assistance. A disability-related need for assistance in managing
required postoperative care, however, does not impact an organ transplant success. According to multiple peer-reviewed studies and reports in multiple countries, people with disabilities who used a support system to assist with postoperative care have been
no less likely to have a successful transplant than people without disabilities.

Therefore, we urge HHS OCR to issue guidance to explicitly do the following:

1) State that organ transplant discrimination violates Title II of the Americans with Disabilities Act and the Rehabilitation Act. Transplant centers, hospitals, and surgeons must not
discriminate against people with disabilities that are not medically relevant to the transplantation process.

2) Clarify to transplant entities that they must incorporate the patient’s support network and services into eligibility policies and practices. These networks should be assessed in conjunction
with the ability of a transplantation candidate to comply with postoperative procedures.

3) State that people with disabilities, like any patients in a program or service covered by the ADA or Rehabilitation Act, should be provided with all necessary auxiliary aids and services they
need for a successful organ transplant and postoperative regimen.
Specifically, Title II of the ADA and the Rehabilitation Act requires that a person with a disability be provided with any auxiliary aids they need in order to access any public or
federally funded services.

No one should be denied their right to life simply because of their intellectual and/or development disabilities. We also suggest you to consult with leading experts and disability rights organizations
to determine appropriate and legitimate language. We look forward to a timely response no later than 30 days from receipt of this letter.

Sincerely,