https://www.change.org/petitions/optn-unos-change-policy-to-allow-pediatric-transplants-of-adult-lungs-based-on-medical-necessity
Lungs Based on Medical Necessity
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Ten-year-old Sarah Murnaghan has end-stage Cystic Fibrosis and has been on the lung transplant list for 18 months. Too sick to leave Children’s Hospital of Philadelphia for three months, she has only a week or two before she will lose her battle. If she were two years older, she would have a high probability of receiving lungs in time. Sarah is eligible for adult donor lungs, but because of her age, she will only receive them after all adult candidates, regardless of how sick they are, have the opportunity to accept them.
This is a policy created by the Organ Procurement and Transplantation Network (OPTN), the nation's organ procurement, donation and transplantation system and enforced through United Network for Organ Sharing (UNOS) which manages US organ transplant system under contract with the federal government.
Based on a 2000 ruling by the US Department of Health and Human Services, which mandated that organ allocation policies must be based on medical necessity rather than waiting time, OPTN implemented a new allocation system based on the severity of a patient's illness (the Lung Allocation Score, or LAS), rather than the amount of time served on the wait list in 2005. This reduced the number of deaths among patients awaiting lung transplant, ensured lungs were allocated to those with less stable diagnoses, and dramatically reduced the average wait time from over two years, and reduced the wait list by half. This new approach only applied to patients over the age of 12.
This approach was not extended to children. Despite the fact that many pediatric patients can use a partial lobar transplant from an adult donor, these young patients are only offered adult donor lungs after all adult patients, regardless of the severity of the child's illness. While Sarah has an LAS score over 60, which would normally place her as the highest priority for her blood type in region, all adults in region with her blood type will be offered the lungs first, even those with more stable diagnoses and lower LAS scores. Sarah will only be offered adult lungs if no adult candidates accept the organ.
Sarah is a top priority on the pediatric list, but the pediatric donors are far fewer than the adult donors, dramatically reducing the number of lungs Sarah is offered. So far in 2013, there were 1,133 adult deceased lung donors and only 70 under the age of 12. The result is only 4 pediatric lung donor recipients in 2013, and 291 for those over 12 years old.
This policy needs to change. The OPTN/UNOS Lung Review Board, a national group of transplant physicians and surgeons, can make an exceptional ruling for Sarah. And they can recommend new policies to OPTN. John Roberts is President of the OPTN/UNOS Board of Directors.
This is a policy created by the Organ Procurement and Transplantation Network (OPTN), the nation's organ procurement, donation and transplantation system and enforced through United Network for Organ Sharing (UNOS) which manages US organ transplant system under contract with the federal government.
Based on a 2000 ruling by the US Department of Health and Human Services, which mandated that organ allocation policies must be based on medical necessity rather than waiting time, OPTN implemented a new allocation system based on the severity of a patient's illness (the Lung Allocation Score, or LAS), rather than the amount of time served on the wait list in 2005. This reduced the number of deaths among patients awaiting lung transplant, ensured lungs were allocated to those with less stable diagnoses, and dramatically reduced the average wait time from over two years, and reduced the wait list by half. This new approach only applied to patients over the age of 12.
This approach was not extended to children. Despite the fact that many pediatric patients can use a partial lobar transplant from an adult donor, these young patients are only offered adult donor lungs after all adult patients, regardless of the severity of the child's illness. While Sarah has an LAS score over 60, which would normally place her as the highest priority for her blood type in region, all adults in region with her blood type will be offered the lungs first, even those with more stable diagnoses and lower LAS scores. Sarah will only be offered adult lungs if no adult candidates accept the organ.
Sarah is a top priority on the pediatric list, but the pediatric donors are far fewer than the adult donors, dramatically reducing the number of lungs Sarah is offered. So far in 2013, there were 1,133 adult deceased lung donors and only 70 under the age of 12. The result is only 4 pediatric lung donor recipients in 2013, and 291 for those over 12 years old.
This policy needs to change. The OPTN/UNOS Lung Review Board, a national group of transplant physicians and surgeons, can make an exceptional ruling for Sarah. And they can recommend new policies to OPTN. John Roberts is President of the OPTN/UNOS Board of Directors.
To:
John Roberts, President, Board of Directors, OPTN/UNOS
John Roberts, President, Board of Directors, OPTN/UNOS
Please reconsider the policy that excludes children under 12 from receiving adult lungs based on medical necessity. And we implore you to start by making an immediate exception for 10-year-old Sarah Murnaghan, who has been on the lung transplant waiting list for 18 months. UNOS policy requires adult lungs to be offered first to adults in less dire need than Sarah. Please treat her life as equal...
Please reconsider the policy that excludes children under 12 from receiving adult lungs based on medical necessity. And we implore you to start by making an immediate exception for 10-year-old Sarah Murnaghan, who has been on the lung transplant waiting list for 18 months. UNOS policy requires adult lungs to be offered first to adults in less dire need than Sarah. Please treat her life as equal to an adult's life. She doesn't have much more time and needs new lungs now. Please give her the chance to receive the adult lungs she needs to save her life.
Sincerely,
[Your name]
[Your name]
Supporters
Reasons for signing
- Reyna Kosla CROWNSVILLE, MD
- 2 days ago
- Liked 23
Because my daughter had CF and a double-lung transplant. Give this little girl the life she is entitled to!REPORT THIS COMMENT: - Lorraine Husack EMMAUS, PA
- 2 days ago
- Liked 15
She has just as much right to have a transplant as any adult. She could have her whole life if given that chance and for the parents to enjoy what some waiting adults have already experienced... (ie. A daughter's sweet 16 birthday, seeing a child off to college, marrying the love of her life. Her parents may never experience the joy because of this legal policy. I'm astounded at this police and my heart and prayers go to the parents of this beautiful little girl!REPORT THIS COMMENT: - Jennifer Ketarkus MADISON, WI
- 2 days ago
- Liked 15
I know Sarah's mom, and how hard this family has fought, the decision on who gets organs should be based on acuity, not how old the child is.REPORT THIS COMMENT: - Barbara Ann Mellace NORWOOD, PA
- 2 days ago
- Liked 14
Saving the life of a child should be important to everyoneREPORT THIS COMMENT: - Nedda Dayley RICHLAND, WA
- 2 days ago
- Liked 13
For Sarah and the other 25% of CF kids who will not make it to 18. They deserve a fighting chance at new lungs too. In honor of my own 9 yr old CF warrior Hunter. <3 p="">REPORT THIS COMMENT:
- Chirstopher Haynes ORLANDO, FL
- less than a minute ago
- Liked 0
Every life is important!REPORT THIS COMMENT: - Gina Bosick WILMINGTON, DE
- 1 minute ago
- Liked 0
I have children and If I were faced with this horrible disease , I would want the best possible options for them and not face them dying because someone wouldnt give them an opportunity to get what they need a live..God Bless all who read this and who face this challenge each dayREPORT THIS COMMENT: - Sammie McGinnis MIDDLETOWN, DE
- 2 minutes ago
- Liked 0
because I am a Delawarean!REPORT THIS COMMENT: - Joseph Maiorano BROOMALL, PA
- 2 minutes ago
- Liked 0
No one especially a child should have to sufferREPORT THIS COMMENT: - patricia scanlon VALLEY STREAM, NY
- 2 minutes ago
- Liked 0
ARBITRARY RULES SHOULD NOT DISCRIMINATE BASED ON AGE ALONEREPORT THIS COMMENT:
News
CF sufferer fights for transplant; family learns she's under limit for lung
Petition OrganizerCystic fibrosis sufferer, 10, fights for life-saving transplant after her family learns she is just under the age limit for adult lungsSarah Murnaghan was born with cystic fibrosis and has just weeks to live She has been on the waiting list for a lung transplant for 18 months Her family has just learned that because of her age, she does not qualify for an adult lung, which would work just as- Reached 20,000 signatures
Parents of Philly-Area Girl Challenge Lung Donor Rule
Petition Organizer- Reached 17,500 signatures
Girl's Family Fights National Organ Donor Rule
Petition OrganizerGirl's Family Fights National Organ Donor RuleA Newtown Square, Delaware County girl is battling a deadly disease. She is in serious need of a lung transplant. But now, a national organ rule may be standing in her way. FOX 29's Dave Kinchen sat down with this brave girl, who is fighting for her chance in the spotlight.- Reached 12,500 signatures
Family Fights for Lung Transplant for Dying Daughter
Petition OrganizerNBC 10 Philadelphia : Family Fights for Lung Transplant for Dying DaughterJanet's 10-year-old daughter Sarah was diagnosed with cystic fibrosis when she was 18-months-old. The genetic disease primarily affects the lungs and digestive tract by causing mucus to clog up the airways, making it hard for the person to breathe. It can also cause bacterial infection and make it difficult to digest food.- Reached 10,000 signatures
10 year old hopes for new lungs, despite birth date
Petition Organizer- Reached 9,000 signatures
Delco girl awaiting lung transplant 18-months later
Petition OrganizerDelco girl still awaiting lung transplant 18-months laterPHILADELPHIA - May 25, 2013 (WPVI) -- A Delaware County girl, being treated at the Children's Hospital of Philadelphia, is in desperate need of a lung transplant, but a policy hurdle is standing in her way. 10-year-old Sarah Murnaghan has remained on the lung transplant list for 18 months.- Reached 5,000 signatures
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