Kidney Transplant denied to girl with disability

Dick Sobsey

Dick Sobsey, the past director of the JP Das Centre on Developmental and Learning Disabilities at the University of Alberta, has brought to my attention the discrimination case concerning Amelia, a young child with Wolf-Hirschorn syndrome, who has been denied a kidney transplant because of her disability.

It clearly appears that this is a case of discrimination, where Amelia is being denied equal access to healthcare, not because the kidney transplant would be less efficacious for Amelia, but because she has a significant disability and is perceived to be, less than equal.

Sobsey stated in his blog:

Kidney Transplant Denied- January 19, 2012 — dsobsey

The parents of a young girl with Wolf-Hirschorn syndrome claim that she was denied a kidney transplant solely on the basis of her intellectual disability at the Children’s Hospital of Philadelphia. The mother’s account of her interaction with the social worker and physician is very specific. There seems to be little room to conclude maybe there was some other reason for the denial. Medical Ethicist Art Kaplan’s poll goes right to the heart of this. While Kaplan concludes, “But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases,” the poll on the page asks simply, “Do you think a mental disability is a valid reason to deny a transplant?” If you have an opinion consider responding to the poll.

Discrimination and negative eugenics are still a part of our world.

Of course, Section 504 of the Rehabilitation Act of 1973 says that no Federal Funds of any kind shall be paid to an entity that discriminates on the basis of disability:

Sec. 504.(a) No otherwise qualified individual with a disability in the United States, as defined in section 7(20), shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. The head of each such agency shall promulgate such regulations as may be necessary to carry out the amendments to this section made by the Rehabilitation, Comprehensive Services, and Developmental Disabilities Act of 1978. Copies of any proposed regulation shall be submitted to appropriate authorizing committees of Congress, and such regulations may take effect no earlier than the thirtieth day after the date on which such regulation is so submitted to such committees.

and the Convention on The Rights of Persons with Disabilities says:
Article 25 – Health

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

…maybe it is time we started taking these things seriously.

In 2006, an article published in the American Journal of Kidney Diseases studied the outcomes for 25 individuals with multiple disabilities who had kidney transplants (American Journal of Kidney Diseases Volume 47, Issue 3, Pages 518-527, March 2006). The group included many with genetic syndromes including some with severe and some with severe intellectual disabilities. 23 got kidneys from living donors and 2 got kidneys from cadavers.The success rate was 100%. to quote the authors: “Surprisingly, the graft survival rate in the handicapped in this series is superior to that of patients with normal intellectual capability.” In other words, those with intellectual disabilities actually fared better than those without.

In addition, another 2006 article published in Pediatric Transplantation, reported 3-year survival rate results from a different sample of kidney transplant recipients and concluded excellent outcomes for individuals with intellectual disabilities. These may not have had as severe disabilities as the previous study. Surprisingly, the sample included 6 cases from Children’s Hospital of Philadelphia. The one-year and three-year survival rates for these individuals was 100%.

Martens MA, Jones L, Reiss, S. Organ transplantation, organ donation and mental retardation. Pediatric Transplantation 2006:10:658–664.

Kidney Transplantation in Pediatric Recipients With Mental Retardation: Clinical Results of a Multicenter Experience in JapanToshiyuki Ohta, MD, Osamu Motoyama, MD, Kota Takahashi, MD, Motoshi Hattori, MD,Seiichiro Shishido, MD, Naohiro Wada, MD, Yoshimitsu Gotoh, MD, Tosh. American Journal of Kidney Diseases Volume 47, Issue 3, Pages 518-527, March 2006