June 8, 2013— -- Javier Acosta no longer has to wait the two months for his 12th birthday to be considered for a lung transplant like any other adult on the organ transplant waiting list.
He can thank efforts by the family of a little girl living a few beds away from him at the Children's Hospital of Philadelphia.
A federal judge ruled in his favor Thursday, granting a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing what's been nicknamed the "Under 12 Rule."
The rule effectively pushed Javier, of New York City's Bronx borough, to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all qualifying adult patients in his area before they can be offered to candidates younger than 12.
"Javier needs a lung transplant to survive. Without one, he will most likely die before his 12th birthday in August," his lawyer wrote in the complaint. "What makes Javier's situation even more heartbreaking is that Javier's brother ... died two years ago at the age of 11 while waiting for a lung transplant that could have saved his life."
Javier, his late brother, Joven, and Javier's co-patient at CHOP, Sarah Murnaghan, 10, were all born with cystic fibrosis, a genetic condition that affects cells that produce mucus, sweat and digestive fluid. Patients typically suffer so much lung damage that they often go into respiratory failure, which is why Javier and Sarah need new lungs to survive.
Attorney Chad Holtzman, who represents Sarah and Javier, said the fact that Joven died waiting for his 12th birthday and a new set of lungs is crucial.
"It shows the importance of why this rule should be overturned," Holtzman said. "Now that they're on the list -- definitely on the on the list for several days -- it gives them the opportunity to get a set of lungs and that's really what we're hoping for."
Holtzman and his team won Sarah's court order on June 5 by convincing federal Judge Michael Baylson that the Under 12 Rule was discriminatory. Sarah's doctor, Dr. Samuel Goldfarb, testified on her behalf.
Baylson asked the courtroom whether anyone knew of other children in the same situation. Goldfarb had another patient eligible for adult lungs but not yet 12 years old: Javier.
"That night, Steve [Harvey, the head lawyer] went to the hospital to meet with Javier's mother," Holtzman said. "We started working up complaints with Javier's case so we could file it the next day."
So while officials at the Organ Procurement and Transplantation Network were creating a second database record for Sarah with a fake birthday to trick the system into thinking she was 12, lawyers were working to get the same thing for Javier.
The next afternoon, he, too, would be considered as a 12-year-old in the organ transplant system database.
Despite their court victories, the clock is still ticking for Sarah and Javier. A judge could rule to reinstate the Under 12 Rule on June 14 at the preliminary injunction hearing.
If they don't receive lungs by then, it was not clear whether or not the duplicate organ candidate records would be deleted. A spokesman for HHS said he could not speculate on what might happen.
Holtzman said the Pepper Hamilton lawyers were preparing for the June 14 hearing, but it was possible the judge could push it back, granting Sarah and Javier a few more days for a match to become available.
OPTN's executive committee will meet June 10 to review the Under 12 Rule by examining data -- such as waiting times, mortality rates and organ offers, according to a letter from the president of OPTN's board of directors, Dr. John Roberts, to Health and Human Services Secretary Kathleen Sebelius.
They will determine if a new policy is needed.
"If available data suggest that a change to the lung allocation policy is warranted, the executive committee would be able to approve an interim policy change and expedited plan for implementation at that time," Roberts wrote in the letter.