In 1995, Sandra Jensen was denied a heart/lung transplant. The transplant had been recommended by her attending physician. It was the only way to save her life. The transplant had even been approved by her insurer, MediCal. The problem – two California transplant centers refused to save Sandra’s life.The good news – Sandra got her heart and lung transplant. She was the first person with Down Syndrome in the world to do so. With the help of friends and supporters, Sandra attracted national attention, and one of the hospitals relented. Sadly, Sandra died 16 months later. She did not die because she did not understand or could not follow the procedures. She died because of the side effects of one of the drugs she took to prevent rejection.
The bad news – many people with disabilities still face discrimination in terms of referral and evaluation for transplantation, and actually receiving a transplant once referred. In this article, we talk about some of the issues individuals and families face, what is being done to overcome them, and what you can do.
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