Allow transplants of adult lungs to children
  • Petitioned John Roberts
  • Responded

This petition was delivered to:

President, Board of Directors, OPTN/UNOS
John Roberts
See response
Secretary, Health and Human Services
Kathleen Sebelius

Allow transplants of adult lungs to children

    1. Family and Friends of Sarah Murnaghan
    2. Petition by

      Family and Friends of Sarah Murnaghan

  1.  
  2.   
June 2013

Victory

To all of you who have taken up Sarah’s cause and signed this petition to change the Under 12 Rule – thank you! Your incredible efforts have helped change policy and save lives. On June 10, the Organ Procurement and Transplantation Network (OPTN) board unanimously passed a resolution to allow children under 12 to be considered for the adult lung transplant list on a case-by-case basis by OPTN’s Lung Review Board.

Three days before, a federal judge had granted Sarah and another boy - Javier Acosta, who is also in Children’s Hospital of Philadelphia with end-stage cystic fibrosis - a temporary restraining order that allowed them to be considered for an adult lung transplant based on their Lung Allocation Scores (LAS).

On June 13, we received news that adult donor lungs became available and Sarah received a lung transplant.

Sarah got lungs quickly after going to the adult list because her LAS finally mattered and she was the sickest one on the list. She had an LAS of 91 out of 100 when transplanted.

We are in the early stages of recovery and Sarah’s battle has been rough, but we’re continuing to fight.

As difficult as this process has been post-surgery, we appreciate that OPTN has now opened the door for other children in Sarah’s unique position to become eligible for adult lung transplant.

The OPTN’s decision does not mean that children under 12 will automatically go to the front of the transplant line. They will not receive special treatment, but they will now be placed on the waiting list based on the severity of their illness the same way people 12 and over are listed.

We hope Sarah’s story moves people to become organ donors, because more than any ruling, it is the heroes who donate their organs that save lives.

God bless you all for standing by Sarah. Thank you to Congressman Pat Meehan, Senator Pat Toomey, Senator Bob Casey, Congressman Lou Barletta, Governor Tom Corbett and all of the other elected officials who fought to change the Under 12 Rule. To all of Sarah’s supporters who signed this Change.org petition, we thank you and ask for your continued prayers in support of Sarah and all people waiting for organ transplants.

Gratefully,

Janet, Fran, Sarah, Ella, Sean and Finn Murnaghan

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.

Recent signatures

    News

    1. Sarah Murnaghan surgery deemed a success

      10-Year-Old Undergoes Successful Lung Transplant After Serious Legal Battle

      PHILADELPHIA -- A 10-year-old girl whose efforts to qualify for an organ donation spurred public debate over how organs are allocated underwent a successful double-lung transplant on Wednesday, the girl's family said. Sarah Murnaghan, who suffers from severe cystic fibrosis, received new lungs from an adult donor at Children's Hospital of Philadelphia, spokeswoman Tracy Simon said.

    2. 10 year old gets adult lung transplant she fought for

      10-year-old gets adult lung transplant she fought for

      (CBS News) Sarah Murnaghan cheered last week when a judge ruled she could be considered for adult lungs. With weeks to live, her health continued to decline. Four days ago, she went into a coma. Then last night, Sarah's mother, Janet, got the call.

    3. 10 year old Sarah Murnaghan out of surgery

      10-Year-Old Sarah Murnaghan Will Receive Lung Transplant

      Sarah Murnaghan, the 10-year-old girl in need of a lung transplant, is on her way to the operating room, her mother Janet Ruddock Murnaghan said on a post in her Facebook page. "God is great! He moved the mountain! Sarah got THE CALL," Murnaghan wrote.

    4. Lung transplant surgery successful

      10-year-old girl undergoing surgery for lung transplant

      Lung transplants are a difficult operation. On May 30, Sarah Murnaghan celebrated her 100th day in Children's Hospital of Philadelphia with her father, Fran, and mother, Janet. (Photo: Murnaghan family via AP) Sarah Murnaghan, the 10-year-old girl suffering from end-stage cystic fibrosis whose bid to get a transplant from adult lungs drew national attention, is getting a lung transplant today, according to AP and CNN.

    5. Philadelphia girl to get lung transplant

      Pennsylvania Girl to Get Lung Transplant

      PHILADELPHIA-A 10-year-old girl whose efforts to qualify for an organ donation drew public debate over how organs are allocated was getting a lung transplant Wednesday, her family said. Sarah Murnaghan, who suffers from severe cystic fibrosis, was receiving her new lungs Wednesday at Children's Hospital of Philadelphia, a family spokeswoman said.

    6. Sarah Murnaghan getting new lung

      Sarah Murnaghan getting new lung

      PHILADELPHIA (AP) - A 10-year-old girl whose efforts to qualify for an organ donation drew public debate over how organs are allocated was getting a double-lung transplant Wednesday after a match with an adult donor was made.

    7. Girl dying of cystic fibrosis to receive transplant

      Girl dying of cystic fibrosis to receive lung transplant

      AP Sarah Murnaghan, the 10-year-old Pennsylvania girl dying of cystic fibrosis, is getting a brand new pair of lungs. According to a Facebook post from Sarah's mother, Janet, the family received word this morning of new lungs that had been made available, and Sarah will be taken to the operating room within the next 30 minutes.

    8. Judge's ruling puts 2nd child in line for adult lungs

      Judge's ruling puts 2nd child in line for adult lungs

      (CNN) -- A judge's ruling Thursday makes another child waiting for a lung transplant in Philadelphia more quickly eligible for adult lungs. The family of Javier Acosta, 11, asked a federal judge to issue a restraining order to block a policy that keeps children younger than 12 from being prioritized for available adult lung transplants.

    9. Family of girl needing transplant "excited" by ruling

      Family of girl needing transplant 'excited' by judge's ruling - CNN.com

      (CNN) -- The father of a 10-year-old Pennsylvania girl who desperately needs new lungs told CNN on Wednesday night that the family was "very excited" after a judge's ruling that could help his daughter get a transplant. Sarah Murnaghan's father, Fran, said on CNN's "Anderson Cooper 360˚" that his daughter, who has cystic fibrosis, has declined slightly in the ast two days.

    10. Sarah Murnaghan has better chance for new lungs, but transplant outcomes mi

      Sarah Murnaghan has better chance for new lungs, but transplant outcomes mixed

      A 10-year-old girl waiting for a lung transplant at the Children's Hospital of Philadelphia now has a top spot on the waiting list for adult lungs following a judge's order that's in effect until a court review next week. Sarah Murnaghan has end-stage cystic fibrosis, a genetic lung disease.

    11. Judge rules in favor of Pennsylvania girl Sarah Murnaghan who needs lung

      Dying 10-Year-Old Placed On Transplant Waiting List

      WASHINGTON -- The organ transplant network has placed a dying 10-year-old girl on the adult waiting list for a donated lung, complying with a judge's unusual order. Health and Human Services Secretary Kathleen Sebelius said Thursday that Sarah Murnaghan also remains on the priority list for a lung from a pediatric donor.

    12. Sarah Murnaghan, girl who needs new lung, placed on waiting list for transp

      Dying 10-Year-Old Placed On Transplant Waiting List

      WASHINGTON -- The organ transplant network has placed a dying 10-year-old girl on the adult waiting list for a donated lung, complying with a judge's unusual order. Health and Human Services Secretary Kathleen Sebelius said Thursday that Sarah Murnaghan also remains on the priority list for a lung from a pediatric donor.

    13. Family of girl desperate for transplant: She can't wait for policy change

      Family of girl desperate for transplant says she can't wait for policy to change

      (CNN) -- The parents of a 10-year-old Pennsylvania girl who's been waiting more than a year for a lung transplant says the girl has essentially been "left to die." Sarah Murnaghan, who has had cystic fibrosis since birth, could die within weeks without a transplant.

    14. Reached 300,000 signatures
    15. Newtown Square family fighting lung transplant rules to save girl's life

      Newtown Square family fighting lung transplant rules to save girl's life - Main Line Suburban Life - Main Line Media News

      Main Line Media News is your source for all Philadelphia Main Line 24-hour breaking news, local news, sports, entertainment and more. View weather updates, watch videos and photos. Keep up with News and local Sports. Find restaurants, entertainment, cars, homes and jobs at Main Line Media News.

    16. Can A Petition Get Sarah Murnaghan The New Lung She Needs?

      Can A Petition Get Sarah Murnaghan The New Lung She Needs?

      More than 72,000 people have signed a petition urging transplant officials to get Sarah Murnaghan, 10, the lung she needs if she is going to survive cystic fibrosis. Philly.com reports that Murnaghan, who is hospitalized at Children's Hospital of Pennsylvania, hasn't yet received a lung because rules state that child transplant recipients can only receive a loung from another child.

    17. Organ-rule bypass sought for Newtown Square girl

      Organ-rule bypass sought for Newtown Square girl

      Posted: Thursday, May 30, 2013, 3:01 AM Two Pennsylvania Republicans - U.S. Rep. Patrick Meehan and Sen. Pat Toomey - have asked the U.S. Department of Health and Human Services to bypass organ allocation rules and help a 10-year-old Newtown Square girl get a lung transplant.

    Supporters

    Reasons for signing

    • sarah morris BRYN MWAR, PA
      • 11 months ago

      awesome

      REPORT THIS COMMENT:
    • Rebecca Oldenburg PINE BLUFF, AR
      • 11 months ago

      I know that if my child, I'd do the same thing these parents are doing so, I want to support them every way I can.

      REPORT THIS COMMENT:
    • Obietta Elizondo OAKLAND, CA
      • about 1 year ago

      Everyone deserves a chance to live, children more than anyone, they are our future. i know transplants are hard to come by and there is probably an adult waiting also but let it be most in need.

      REPORT THIS COMMENT:
    • Francis Tollard GRAND RIDGE, FL
      • over 1 year ago

      LlIMITS ON THE RIGHTS OF LIFE IS A CRIME.

      REPORT THIS COMMENT:
    • Robert Rimac PALM SPRINGS, CA
      • over 1 year ago

      The first set of transplanted lungs failed, so now she has a second set. Good luck, Sarah!

      REPORT THIS COMMENT:

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