by    0   0
AbledIssues banner shows half-dissolved images from marches for human rights and disability rights and a close up of wheelchair tires stuck on a staircase over a backdrop of the Earth at sunrise as seen from space with the AbledIssues Logo centered near the top.
AbledIssues Post banner shows a photo of Autumn Chenkus lying on a pillow holding the finger of her infant son Maverick, who has an oxygen tube around his cheeks and in his nose. We see a bit of his father Charlie Higgs nose and mouth at the top left edge of the photo. The headline reads: Abled Issues: Organ Transplants: Should persons with a disability be denied? | One family's saga.

A ‘hot-button’ topic with suspicions about favoritism for the wealthy and Insurance company discrimination against the poor and disabled

 

CNN’s Senior Medical Correspondent, Elizabeth Cohen, has done a lengthy report about a disabled baby being denied a heart transplant as part of The Empowered Patient series.

 

In this case, Maverick Higgs was born with a heart defect, and was in heart failure even after two surgeries. Doctors discussed the question of a heart transplant, but told the parents, Autumn Chenkus and Charlie Higgs that Maverick didn’t quality for a transplant because of a rare genetic defect called Coffin-Siris syndrome, which they claimed put him at a high risk for tumors and infections.

 

AbledIssues-a family photo shows  Charlie Higgs and Autumn Chenkus lying on a pillow flanking their infant son Maverick.

 

After doing extensive research. including talking to a co-author of one of many studies on the condition, Autumn Chenkus found that not one of the studies cited any risks for tumors and infections. Yet, even this discovery was not enough to bring the doctors onside and it was then she felt the doctors were discriminating because children with Maverick’s condition grow up to have disabilities.

 

 

Being stewards for scarce organ donations or perpetuating misinformed bias?

 

At the moment in the United States, some 3,500 people are on waiting lists for a heart transplant. Last year, 321 people, including 19 infants died waiting. Demand is increasing, while the supply of donor organs remains relatively static.

 

This growing scarcity of a precious medical commodity is forcing more doctors to choose for patients with the best chances of living a longer life and enjoying a higher quality of life from a transplant.

 

Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

 

Elizabeth Cohen’s report points out two cases in which public outcries reversed doctors’ decisions to withhold transplants from disabled individuals. One case, in 1995, involved a patient named Sandra Jensen who received a note from a doctor saying, ‘We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations’. After a newspaper published the note, the public outcry led to Jensen getting a new heart. She died 16 months after her heart-lung operation from one of the 32 types of cancer associated with transplantation.

 

The other case, last year,¬†involved – then, three year-old –¬†Amelia Rivera, a New Jersey girl who was denied a kidney transplant because she has the genetic disorder Wolf-Hirschhorn syndrome which delays growth, development and intellectual abilities and, depending on the type, has a median life-expectancy of 34 years.

 

Amelia’s mother blogged about the denial, it went viral and resulted in an online petition that forced the Children’s Hospital of Philadelphia to reverse its decision.

 

These cases have touched-off a firestorm of debate about who should be eligible for such transplants, giving the scarcity of donated organs. Indignant posters to various comment threads cite discrimination and a double-standard for celebrities and the rich, using singer/musician David Crosby , television’s JR. Ewing – actor Larry Hagman – and baseball legend Mickey Mantle as examples of money and fame buying notorious alcoholics a liver transplant.

 

What do you think? Read Elizabeth Cohen’s full report at CNN and then add your voice in our facebook comments section below.

Related Organizations banner

 

Abled Public Service Ad for the National Foundation For Transplants shows a young girl snuggling face to face with her father. Click here to go to their website.

 

Abled Public Service Ad for the American Organ Transplant Association shows a pair of illustrated hands holding a square blue and green card saying Donate Life. Give thanks. Give Life. Click here to go to their website.

 

Abled Public Service Ad for The Living Bank. Their logo consists of light and dark green letters with  the dot on the first I attached to a curved arrow that is then duplicated and inverted under the second I in the word LIVING. The subtitle reads Continuous Flow of Life-Giving Transplants. Click here to go to their website.

 

Abled headlines Banner

 

AbledFamily Post link banner shows a single candle burning in front of a black and white montage of the victims of the Sandy Hook Elementary massacre in Newton, Connecticut with the headline: Newton +1: How the families are doing and How to talk to your children about it. Click here to go to the post.

 

AbledPeople link banner shows a black and white photo of former South African President Nelson Mandel looking out between the bars on the window of his former prison cell. The headline reads: Nelson Mandela: 1918-2013: A Tribute. Click here to go to the post.

 

Click here to return to the Abled.com homepage.

thoughts on this post

Back to Top