Professional Documents
Culture Documents
October 12,2016
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.
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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
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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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GWEN MOORE
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WILLIAM R. KEATIN
Member of Congress