Justina Pelletier, a 16-year-old diagnosed with mitochondrial disease, went to Boston Children’s Hospital early in 2013 after coming down with a bad case of the flu. A young neurologist on call took over her case. He vehemently disagreed with her regular doctor’s diagnosis and aggressively sought state intervention. So began an emotional ordeal that separated the teenaged girl from her family for 16 months as her health deteriorated.
When Justina arrived at the hospital that chilly February day, she was treated by Jurriaan Peters. Although her longtime doctor, Dr. Mark Korson of Tufts Medical Center, was treating her for mitochondrial disease, Peters and a team of psychologists from Children’s Hospital told the Pelletiers that Justina’s symptoms were actually caused by a controversial psychiatric condition called somatoform disorder, which manifests itself with physical symptoms similar to those of mitochondrial disease.
The teenager’s health declined sharply under her new psychological treatment. Before Justina went into state custody, she had been ice-skating, going to classes with her friends, and attending church services with her family. While under government care, she had no access to education and was unable to attend church services or celebrate religious holidays. She is now confined to a wheelchair.
Justina’s oldest sister, Jennifer Pelletier, who played an active role in her family’s battle against Children’s Hospital, tells National Review Online: “Before Justina was at Children’s, she was a very active kid. She was eating, doing gymnastics around the living room, going to school, socializing, being very mobile, and ice-skating. Now she is completely the opposite: She can’t stand, sit, or walk on her own.”
The Pelletiers’ public custody battle came to a close this June when Justina was returned to her family, but Justina’s supporters refuse to let the issue lie. As the medical community gains clout in the legal system, often at the expense of parental rights, cases like the Pelletiers’ continue to pop up with increasing regularity.
The Boston Globe< reported late last year that there had been at least five similar cases involving Children’s Hospital over the last two years, and medically based custody conflicts have occurred with other hospitals as well. Reverend Mahoney tells National Review Online that there have been “hundreds, maybe even thousands” of similar cases in the United States. Politicians and families worry that these cases will only become more common if nothing is done to change the system.
Accordingly, a bipartisan group of lawmakers is pushing for national legislation to protect children like Justina in the future. U.S. representatives Michele Bachmann (R., Minn.), Karen Bass (D., Calif.), Tom Marino (R., Pa.), and Jim McDermott (D., Wash.) introduced the “Justina’s Law” bill last month. It would pull federal funding from institutions that perform dangerous medical research on wards of the state.
This practice is currently allowed, according to Health and Human Services Department regulations. The Common Rule for the Protection of Human Subjects states that “children who are wards of the state or any other agency, institution, or entity can be included in research,” including research “involving greater than minimal risk and no prospect of direct benefit.”
Children who are wards of the state are perhaps the most vulnerable members of our society, since they lack the watchful protection of a parent or guardian. Even if current regulations are followed, little is done to make up for this lack of careful oversight. Christine Cox, director of outreach for patient-advocacy group MitoAction, tells National Review Online: “This law is extremely important in that it limits research on and increases oversight of children taken into custody by the state.” And Representative Bachmann tells NRO, “We don’t want any child to become a guinea pig. Justina’s case was so outrageous and egregious it needs to be dealt with.”
Earlier in July, Justina met with over 70 lawmakers in D.C. to rally them in support of the legislation. At a news conference last week, the teen asked for help getting Justina’s Law passed, “so nothing ever happens to any other kid.”
Critics of the proposed law are concerned that although the legislation would benefit wards of the state, it may not do enough to protect families who are wrongfully accused of medical child abuse. Jessica Shriver, a patient and family advocate with MitoAction, describes in an e-mail how, after personally experiencing “two false accusations of medical abuse,” she “became concerned that current medical abuse guidelines are so nebulous they are unable to distinguish between actual abuse and organic disease (like Mitochondrial Disease).” Shriver says she agrees with what Justina’s Law is trying to accomplish but suggests that “successfully reducing false accusations of medical abuse against families . . . will require legal and ethical clarification on how to resolve legitimate disputes between well-respected medical professionals.”
Attorney, author, and patient advocate Beth Maloney, who has been involved in several medical child-abuse cases, tells me: “Medical disagreements between physicians are being worked out on the backs of parents in courtrooms. You have two doctors with different opinions, and normally a parent would make that decision, but in these cases the hospital is making the decisions.” She suggests that “the Children’s doctors should have sat down with the Tufts doctors with the oversight of someone who has medical expertise.”
Instead, the doctors from Children’s Hospital, who forcefully took over Justina’s care, refused to even consult with the well-respected doctor from Tufts who had diagnosed her with mitochondrial disease. Perhaps this entire tragedy — which caused months of emotional distress for the Pelletiers and left Justina in a wheelchair — could have been prevented if the Children’s doctors had been forced to slow down and reconsider their diagnosis with the oversight of a government-mandated medical-review board. Legislation has not yet been introduced that would require such a review board.
Despite these concerns that Justina’s Law may not do enough to protect vulnerable children and families, proponents of the legislation argue that it is a necessary first step. The Pelletiers’ spokesperson tells me that the family is “thrilled that Congresswoman Bachmann has introduced this legislation, but [they] only view this as a first step in addressing the growing concern over government agencies usurping parental rights.”
If passed, it will provide protection for children who are wards of the state. But even Representative Bachmann understands that this legislation is only an “incremental advance” toward properly handling cases like Justina’s in the future. Bachmann says, “This is the beginning stage of being able to deal with hospitals, clinics, and government policies that allow risky medical experimentation on children when it is of no benefit to the child.”
Even after Justina’s Law is passed — as it hopefully will be — lawmakers will still have to take additional steps to ensure that vulnerable children and families are not subjected to erroneous medical child-abuse allegations.
— Caroline Craddock is a research intern at National Review.
editors’ Note: This article has been revised since its initial publication.