The (OPTN) has made permanent a previous temporary rule that grants some sick children under 12 years old better access to adult donor lungs, after a vote by its board of directors on Monday.
The new permanent rule now allows other children to receive adult donor lungs transplant but still on a case-to-case basis, as opposed to the Under 12 Rule wherein children under 12 must wait for pediatric lungs.
The temporary rule was made last year, following a high-profile case brought by parents of Sarah Murnaghan, 10, who was then dying from end-stage cystic fibrosis in June 2013 and asking to be allowed to get a lung transplant. Her parents, Fran and Janet Murnaghan, argued that the rule was discriminatory as Sarah could only be offered the adult lungs after having been offered to matching adult patients.
The court judge granted her parents’ demand to get the adult lung transplant despite criticisms from many people in the field of organ transplant and objections of the then-Secretary Kathleen Sebelius of the Health and Human Services. The case, in fact, sparked a national debate.
OPTN eventually drafted a temporary exception policy allowing transplant patients who are younger than 12 to have the opportunity to request for exceptions to the rule. The temporary policy was given an expiry date of July 1, 2014. Monday’s vote on the new guidelines changed all that, however.
"This is a difficult balance for very young lung transplant candidates in particular," Dr. Stuart Sweet, OPTN’s board secretary, says in a statement. "There are very few candidates in this age group and the progression of their lung disease may be considerably different from other patients, even those just a few years older. This exception is meant to provide an appropriate balance for a specific group of candidates."
Sarah’s parents described the board’s decision a hard-won victory, research says. They asserted they pursued the change in the rule not only to benefit their own daughter but other children in the same state as well.
“We didn’t know if the rule would become permanent, but are thrilled that it appears that it will for two reasons: more children will be fortunate enough to receive life-saving lung transplants, and the medical community has decided that this is the right step to take,” Janet writes in an email to the NBC News.
Sarah underwent a first lung transplant that failed, but last year’s transplant on June 12 and 15 was successful. Gathered reports say Sarah has been doing really well since the second transplant.
Lung transplant cannot heal cystic fibrosis, according to research, but it can prolong the usual life expectancy of patients that is 37 years old but which continues to change with the development in medical practice and profession.
OPTN administers the national waiting list of candidates and matches organ donors. In the U.S. alone as of Monday, the network says 1,680 people are awaiting lung transplants, which include 16 patients aged 10 and below and 25 others aged 11 to 17.