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CF Foundation Comments on Child with CF Awaiting Lung Transplant

June 6, 2013

The Cystic Fibrosis Foundation has been carefully following the story of a 10-year-old girl with cystic fibrosis who has severe lung disease and has been on a pediatric lung transplant list for 18 months. Her family has organized an online petition and filed a lawsuit to help her receive an adult donor lung.

On June 5, a federal judge ordered the Department of Health and Human Services to allow the girl to be moved to the adult lung transplant list, which could improve her chance of receiving a donor lung. The same judge ruled June 6 that an 11-year-old boy with CF could also be placed on the adult transplant list.

Nearly 1,700 people are on a waiting list for a lung transplant in the United States. Unfortunately, there is a shortage of organs available for transplant, and therefore, the decision-making process is complex and depends on many factors. For these reasons, the CF Foundation does not take a position on individual transplant cases or any other private medical cases, which we believe are important, private discussions that should take place between the patient and family, doctor and medical institution.

“Our thoughts and prayers go out to these families — and to all families who are in need of organ transplants. This situation underscores the problem of the shortage of organs for transplantation in the U.S.,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “Cystic fibrosis is a devastating disease for everyone it touches and that’s why we will never rest until we find a cure.”

The CF Foundation continues to support further advances in the transplant field, including transplant drug research and development, and to advocate for policies that help people with CF get lung transplants. Lung transplantation is a vital option for some children and adults with severe lung disease.

This case provides a stark reminder that cystic fibrosis is a life-threatening disease. Despite great advances in drug research and development, young people still die from the disease. Our mission to find a cure for CF remains as urgent as ever.  

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*Updated 6/13/2013: The 10-year-old girl underwent a double lung transplant on June 12, which, according to her family, went well. 

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.