Murnaghan Family to OPTN/UNOS: Stop Age Discrimination!

PHILADELPHIA, May 28, 2013 /PRNewswire/ -- In response to a public statement from the organizations that regulate organ distribution saying they "cannot create a policy exception for one patient," devoted parents Fran and Janet Murnaghan have renewed their commitment to fight the policy that prevents children under 12 from receiving adult transplant lungs based on need.

The Murnaghans' 10-year-old daughter, Sarah, has end-stage Cystic Fibrosis and weeks left to live. They refute the idea they are seeking an "exception." Rather, they want to the change the policy that not only lets Sarah live, but applies to all children in her situation.

The Organ Procurement and Transplantation Network (OPTN) created a donation and transplantation system enforced through the United Network for Organ Sharing (UNOS).  The system runs on a Lung Allocation Score (LAS), which is based on the idea that lungs should be given to the sickest patients first, saving more lives as those who are stable can wait longer. Under the old system, patients in need of a transplant would receive new lungs on a first-come first-served basis.  UNOS has touted the argument when speaking of the benefits of switching to their LAS system back in 2005.

But the system is flawed in that it discriminates by age.  If Sarah were 12, she'd have a higher chance of receiving new lungs. But since she's 10 she has access primarily to children's lungs, which are in much shorter supply.  Under current rules, the only way Sarah can receive adult lungs to save her life is if all other patients in her region aged 12 or older turned them down first.

Sarah has been on the lung transplant list for 18 months, and has been living at Children's Hospital of Philadelphia for the past three months.  Her situation is rapidly declining. Each cough sends pains through her spine, with two fractured vertebrae from disease caused bone break down. She has hearing loss in both ears due to toxic antibiotics necessary to save her life. She vomits daily, is fed through an IV and is strapped to masks that make communication even harder. She has CF-related diabetes and is pricked all day. Sarah has lost her childhood, her ability to live at home, and go to school.

"We are not asking for preference for Sarah, we are asking for equality," said Sarah's mother, Janet Murnaghan. "We strongly believe Sarah should be triaged based on the severity of her illness, not her age. This is basic emergency medicine - you treat the sickest patient first. If you took your child to the ER and they had to wait behind all adult patients, regardless of the severity of their illness or when they arrived, wouldn't it seem like adults were being prioritized over children? That's what's happening here, and as a result, we're in a race against time to ensure that Sarah is treated fairly."

In Sarah's Gift of Life Region, there are only three patients awaiting lungs with Sarah's blood type, with a Lung Allocation Score over 50 - Sarah's score is 66. In the immediate Philadelphia area, Sarah has the highest LAS score of anyone waiting for lungs with her blood type. If she were to be considered as everyone over 12 is, based on the severity of her illness, she would be number one on the transplant list. That's not giving preferential treatment, or making an exception, according to the Murnaghans. 

"It's letting the system work the way it was set up to work," Fran said.

The Murnaghans vow to continue the aggressive public relations campaign that OPTN acknowledged in its statement has "focused public attention on the needs of lung transplant candidates, especially those who are young children."

As part of that effort, the Murnaghan started a petition on Change.org that garnered 10,000 signatures in less than 24 hours and had received more than 22,000 signatures by the end of its third day.  The petition, which can be found at www.change.org/savesarah, asks includes letter to UNOS Board President John Roberts to reconsider the adult lung transplant policy to be more equitable to all children. 

The injustice of the OPTN/UNOS policy has sparked a global outcry with petition signatures from across the globe and coverage in several media outlets, including:
http://www.cnn.com/video/?/video/bestoftv/2013/05/26/exp-10-year-old-hopes-for-new-lung.cnn

http://abclocal.go.com/wpvi/story?section=news%2Flocal&id=9116387

http://www.myfoxphilly.com/story/22428653/girls-family-fights-national-organ-donor-rule

http://www.dailymail.co.uk/news/article-2331621/Sarah-Murnaghan-Cystic-fibrosis-sufferer-10-given-just-weeks-live-fights-life-saving-transplant-family-learns-just-age-limit-adult-lungs.html

Sarah's cause also benefitted from a Twitter campaign - #sign4sarah - pleading with individuals to sign the petition and follow Sarah's story in order to make a difference.

Sarah's parents Janet and Fran continue their fight, meeting with CHOP doctors daily to determine end-stage options for their daughter.

"If we can't get UNOS or a transplant center to consider Sarah's case based solely on the severity of her illness, we might lose her," said Janet. "I'm fighting this ruling not only for Sarah, but for all kids who are being discriminated against based on their age. This isn't over, not by a long shot."

To follow Fran and Janet's fight for their daughter's life, friend Janet Ruddock Murnaghan at: https://www.facebook.com/janet.murnaghan?fref=ts

CONTACT:
Tracy Simon
C: 267-679-2774
[email protected]

SOURCE Murnaghan Family