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

Is the tragic drowning of a disabled toddler in Sydney an indirect consequence of publicity given to the merits of legalised euthanasia?

The story of Maia Comas, the two year old girl with Retts Syndrome who died of drowning in Sydney Australia - December 3, 2007, raises many questions about societal attitudes toward people with disabilities.

The Coroner who investigated the case was unable to decide whether this was an accident or not, but the coroner did state that "the circumstances suggested “great irresponsibility" on the part of her parents."

If Maia Comas did not have Rett Syndrome, would the coroners decision have been different?

An article written by Australian, Michael Cook, examines some of the facts of the case. This is what Cook wrote:

Two months before her death, Maia was diagnosed with Rett syndrome, a disorder that often leaves sufferers with severe physical and intellectual disabilities. Her parents, 36-year-old Pablo Comas and 31-year-old Samantha Razniak were shaken by the news.

Their ramshackle home was in the beachside suburb of Curl Curl -- “two hippies living in a house playing guitar," in Mr Comas’s words. They felt utterly unprepared for the burden of caring for their daughter.

After the tentative diagnosis, they probed Maia’s pediatrician about the legal and medical position of euthanasia for children with incurable but non-terminal conditions. The doctor – who had never heard such a request -- responded “this is not an option under Australian Law and any action causing harm in any way is a criminal act. Any action causing death actively or passively would be considered murder.”

But Ms Razniak was at her wits’ end. She rattled government social workers by telling them: “Do you understand that she will grow into a young woman and have the mind of a 2 to 10 year old. The head, hands and feet all stop growing. I don’t want to see my daughter become a monster, to become ugly… I’d rather her die now than die slowly.”

When she was reassured by social workers that she could get government support, she responded, that the only support she was interested in was euthanasia. “I want to get on with my life and not see all this ugliness – clinics, home disabled people, doctors.”

Mr Comas felt much the same. He once asked a social worker: “Why do they keep children with these disabilities alive? It doesn’t seem fair on the children.”

The social workers were alarmed by the parents’ attitude, but the case seems to have fallen between the cracks. On December 3, 2007, Maia’s visiting grandmother discovered her floating in a unfenced wading pool. Her mother, who was a trained swimming instructor who was working at a childcare centre, was too “freaked out” to revive her. Maia was pronounced dead at a nearby hospital.

The story of Maia Comas reminds me of the research that was done by Dick Sobsey that showed many more parents killed their children with disabilities during the trial and the media promotion of Robert Latimer. Link to Latimer's Lethal Legacy.

Angel of Death and her Supervisor

Two nurses were indicted in April for causing the death of five patients at the McHenry County Nursing Home in 2006 in Woodstock Illinois.

From the article in the Chicago Tribune:

Marty Himebaugh, a Lake in the Hills resident and a licensed practical nurse, was charged with four counts of criminal neglect of a long-term care resident, one count of obtaining morphine by fraud, and one count of unlawful distribution of a controlled substance.

Penny Whitlock, a former director of nursing at the facility and a Woodstock city resident, was charged with five counts of criminal neglect of a long-term care resident and two counts of obstructing justice.

Both women have pleaded not guilty in McHenry County Circuit Court.

The Chicago Tribune article also stated:

A supervisor allegedly told a nurse, "I do not care if you play the angel of death, just don't let me know about it," the report says.

"She won't make it through the day," the report says the nurse told a co-worker, referring to a restless patient. "I made sure of that."

The Department of Public Health report also refers to a 56-year-old man with Down syndrome who died in April 2006 and quotes a nurse telling a co-worker: "Those people aren't meant to live that long. They are meant to die in their teens and I'm going to help him along."

Chicago Tribune article:
http://www.chicagotribune.com/news/local/chi-nurse-deaths-web-26-sep26,0,6187039.story

At the time that the indictments were announced, prosecutors said they did not believe there was enough evidence to prove that any of the patients were killed.

Dick Sobsey, director of the John Dossetor Health Ethics Centre, Dobsey stated in his blog:

In my opinion, if the statements made by these nurses can be verified, the nurse who is alleged to have killed these patients should be charged with attempted murder or murder or both. If it can be shown that the medication overdoses cuased the death, the charge should be murder. If, as is often the case for debilitated patients, the overdose cannot be shown to be the cause of death, the charge should be attempted murder.

Link to Dick Sobsey's blog comment:
http://icad.wordpress.com:80/2008/09/30/angel-of-death-and-her-supervisor/

Naomi Hill: Death by Shame

For those who question whether or not people with disabilities experience a social devaluation in society, here is the sad story of Noami Hill.

Naomi, a four year old, was killed by her mother Joanne, because it appears that Joanne was embarrassed by her daughter who was born with Cerebral Palsy.

Link to Dick Sobsey's blog comments:
http://icad.wordpress.com/2008/09/11/killing-naomi-hill/#more-694