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October 12,2016

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 Rotential
recipient of any organ transplant solely on the basis of an individuals 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.1 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 Universitys
Langone Medical Center, wrote in a Medscape editorial, If the potential recipient is severely intellectually
impaired.. .1 do not think it makes sense to consider that child for a transplant either.2

1 Richards CT, Crawley La Vera M, Magnus D. Use of neurodevelopmental delay in pediatric solid organ transplant listing
decisions: Inconsistencies in standards across major pediatric transplant centers. Pediatric Transplantation 2009:13:843
850.
2 Consider Age and Intellect When Rationing Transplant Organs? Medscape. Dec 03, 2012.
PRINTED ON RECYCLED PAPER

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 multiple3 peer-reviewed studies4 and reports5 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.6
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 patients 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,

/11

MICRA L M. HI DA

AA4~
JAIME HERRERA
BEUTLER

Member of Congress

Member of Congress

~ Ohta T, Motoyama 0, Takahashi K et al. Kidney transplantation in pediatric recipients with mental retardation: Clinical
results of a multicenter experience in Japan. Am J Kidney Dis 2006; 47: 518527.
I Samelson-Jones, E., Mancini, D. M., & Shapiro, P. A. (2012). Cardiac Transplantation in Adult Patients with Mental
Retardation: Do Outcomes Support Consensus Guidelines?. Psychosomatics, 53(2), 133-138.
~ Martens, Marilee A., Linda Jones, and Steven Reiss. Organ transplantation, organ donation and mental retardation.
Pediatric transplantation 10.6 (2006): 658-664.
6 Panocchia, N., Bossola, M., & Vivanti, G. (2010). Transplantation and Mental Retardation: What Is the Meaning of a
Discrimination?. American Journal of Transplantation, 10(4), 727.

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Member of Congress

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DONALD S. BEY1, Jj
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FREDERICA WILSON
Member of Congress

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LORETTA SANCHEZ
Member of Congress

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Member of Congress

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Member of Congress

CHRIS VAN HOLLEN


Member of Congress

CHARLES B. RANGEL
Member of Congress

GWEN MOORE
Member of Congress

JAMES R ~L NGEV1N
Member of Congress

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of Congress

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CHRiSTOPHER H. SMITH
Member of Congress

SAM FARR
Member of Congress

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PETE SESSIONS
Member of Congress

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Member of Congress

ALAN GRAYSON
Member of Congress

JUDY CHU
Member of Congress

WILLIAM R. KEATIN
Member of Congress