Sandra Jensen

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Sandra Jensen was born with Down syndrome and a defective heart; a condition which often accompanies DS. At 34, Jensen's heart and lungs were compromised, and her doctor told her that to survive she would need a transplant of all three organs.[1]

She applied to transplant programs, but was told that they did not perform the heart–lung transplants on people with Down syndrome. No American patient with Down syndrome had ever undergone the procedure, which requires organs so hard to obtain that demand outruns supply and dozens of would-be recipients each year die waiting.

To Ms. Jensen, who had worked as an advocate for the rights of people with disabilities, and to supporters, this was unacceptable. They began a very public battle, gaining nationwide attention arguing that Down syndrome should not be enough to automatically deprive a patient of a chance to survive.[2] They won. On January 23, 1996, Sandra Jensen received the requested transplant at Stanford University Medical Center, and was released on March 1.

Her case was seen by many as a test of whether hospitals could use blanket categories to deny special treatments. The hospitals argued that mental limitations of Down syndrome could affect a patient’s ability to follow a complicated and demanding post-operative regime in which mistakes can mean death; and so organs in short supply would do more good if they were given to others. “The whole time we were fighting with the medical establishment, all we were asking was that they look at Sandra as an individual,” said Sandra’s mother. Unlike many people with Down syndrome, Ms. Jensen had lived on her own for years and had held various part-time or volunteer jobs. Among the methods she and her supporters used was a reminder to the hospitals that under the Americans with Disability Act, an institution can lose all its federal funding if it is shown to have discriminated against people with disabilities.

Sandra Jensen died on 9 May 1997, 16 months after her heart-lung operation,[3] from a type of cancer frequently associated with transplantation.[4] It should be known that, according to the November 2, 2011, issue of the Journal of the American Medical Association (JAMA), there are currently 32 different types of cancers that are associated with transplantation.[5]