Rejecting calls to put a sick Pennsylvania child higher on a heart-transplant list, the federal government argued Tuesday that every kid is entitled to equal treatment.
The U.S. Department of Health and Human Services is the defendant in a recent lawsuit filed by the parents of a seven-year-old whose ranking on the list has been complicated by at-home treatment and severe illness. Without a transplant, the girl is sure to experience more bleeding in her airway while being unable to use a Ventricular Assist Device, the suit says.
“Although Plaintiffs focus on the Child’s risk of irreparable injury, this case is not about having empathy for the Child or sympathy for her parents – it is about the fundamental inequity of prioritizing the Child’s life ahead of other sick children’s lives,” attorneys at the Department of Justice wrote in a motion to dismiss in Philadelphia federal court.
“Moving the Child up on the waiting list will move other children down. Indeed, if parents could sue HHS to gain their children a higher spot on the waiting list, then the allocation of organs would be the product of never-ending litigation favoring those that retain counsel.
“As a result, judges, and not the experts selected by Congress, would make medical judgments with life and death consequences.”
The girl is battling end-stage heart disease and renal failure and needs a transplanted heart and kidney. Under the National Organ Transplant Act, the federal Organ Procurement and Transplantation Network must issue priority rankings for waiting lists that order patients “from most to least medically urgent.”
The girl’s classification as Status 1A is the highest priority, but her parents last year decided against having her hospitalized to instead care for her at home, which they have been doing since 2021. It wasn’t until Jan. 7, 2026, that she began to accrue hospital time, but at one point she was too sick to receive a transplant and was taken off the Status 1A list for a period of time.
The suit calls on DHHS Secretary Robert F. Kennedy, Jr. to “prevent malfunctioning” of the organ transplant system. Child Doe’s parents wrote letters to authorities in the days leading to the lawsuit.
On May 1, the Health Resources and Services Administration asked OPTN to answer questions posed by the plaintiffs’ request. It gave OPTN until May 22, but Child Doe’s parents say that does not address the potential for a life-threatening emergency happening before then.
Stephen Harvey of Steve Harvey Law LLC in Philadelphia filed the lawsuit, which seeks an injunction that reorders the waiting list “to reflect the medical urgency” of her situation and lets Child Doe stay home without losing Status 1A time, if staff at Children’s Hospital of Philadelphia feels it is medically acceptable.
But there are three thresholds the parents must meet to obtain an injunction, DHHS wrote. The first is that any agency action that it has the discretion to implement is not reviewable under the Administrative Procedure Act – “There is neither a legal requirement nor express legal authority for the Secretary to order the OPTN to provide Plaintiffs’ requested relief,” the motion says.
And there has been no “final agency action” to challenge, because the letters from the parents are still under consideration. Third, an injunction can only be imposed if DHHS failed to take a “discrete” action it was “required” to.
“And, even if Plaintiffs could state a valid cause of action under the APA, which they surely cannot, Plaintiffs’ request to substitute their judgment based on the subjective circumstances of the Child’s condition in place of the OPTN’s heart allocation policy, and to require the OPTN to provide special treatment to a single individual in conflict with NOTA’s requirements for equitable allocation, is not likely to succeed,” the motion says.
“In short, the OPTN did not err in its application of the heart allocation policy to the Child.”
