It's hard to determine where the tragedy begins and the travesty ends. It's a story that has gripped and enraged a nation. It's a sordid tale of governmental tyranny, child imprisonment and endangerment, harmful and unethical medical experimentation, as well as a number of gross conflicts of interest.
This is the story of a child, Justina Pelletier, who faced 16 long months of child abuse and incarceration at the hands of both Massachusetts's government officials and callous medical personnel at Boston Children's Hospital.
Thankfully, due to the actions of Liberty Counsel, a Christian civil rights law firm, powerful media voices like Glenn Beck and tens of thousands of outraged and outspoken Americans, 16-year-old Justina is now home.
But the saga is not over. This sort of travesty is happening all over the country at the hands of underqualified, overzealous government officials. And it's all being done in the name of "child and family" welfare.
Now Congress is getting involved.
Justina Pelletier's story is that of a 15-year-old ice-skating competitor who was taken from her parents by the Massachusetts Department of Children and Families (DCF), locked up for 16 months and is now confined to a wheelchair because of maltreatment for a metabolic disorder.
Here is an abbreviated timeline of events (For greater detail see this report):
- Before her parents admitted her to Boston Children's Hospital, Justina was being treated for mitochondrial disease, a rare genetic disorder, by one of the leading experts in the field, Dr. Mark Korson, originally at Tufts Medical Center.
- At Boston Children's Hospital a young, inexperienced doctor in just the seventh month of his internship inexplicably changed the working diagnosis from mitochondrial disease to somatoform disorder, shifting Justina's treatment from physical to mental.
- When Lou and Linda Pelletier tried to discharge their daughter the following day, Feb. 14, 2013, and return her to care at Tufts Medical Center, they were refused, and DCF arbitrarily took Justina into custody as a ward of the state and moved her to a psychiatric ward, where she remained for 11 months. DCF egregiously accused the Pelletiers of "medical abuse" with absolutely zero evidence.
- Justina was then confined to a nonmedical treatment facility where she suffered every day with excruciating pain, and her health rapidly plummeted.
- In Massachusetts, prisoners are entitled to regular visits, education and medical care. Justina was treated worse by DCF than incarcerated felons. She had a one-hour, supervised visitation per week, no education and abysmal medical care. Seeking to silence her parents, DCF filed a complaint to hold the father in contempt of court for violating an alleged (and unconstitutional) gag order that was never put in writing.
- BCH psychologist Dr. Simona Bujoreanu put a self-serving stamp of approval on the Somatoform diagnosis after only 25 minutes with Justina, likewise without contacting other physicians. Dr. Bujoreanu is researching Somatoform Disorder under an NIH grant.
- Here's the kicker: Any ward of the state is subject to research being performed upon them, without their consent, even if that research is not primarily for the ward's benefit. This is a blatant conflict of interest. DCF makes the child a ward of the state and the psychologist has her lab rat. Great deal for them, horrible deal for the child.
- After tremendous media and legal pressure, on Friday, June 6, Massachusetts Health and Human Services (HHS) filed a motion for review of reconsideration and dismissal in the case of Justina Pelletier. This action followed Liberty Counsel's motion to return Justina home.
- On June 18, after 16 months of being held prisoner by the bureaucracy of the state of Massachusetts at the behest of Boston Children's Hospital, Justina Pelletier was finally released and returned to her home with her parents, Linda and Lou Pelletier, and her three older sisters.
Now Rep. Michele Bachmann, R-Minn., and other lawmakers are getting involved. Yesterday they introduced a bill in the House of Representatives, "Justina's Law." It's a bipartisan bill intended to insulate children and families from this kind of outrageous treatment.
While bringing this kind of government and medical abuse to a standstill may be difficult, Justina's Law aims to at least offer some level of child protection.
At issue is a portion of BCH's policy that states, "Children who are Wards of the State may be included in research that presents greater than minimal risk with no prospect of direct benefit." On page two of the policy, BCH defines "ward" to include "foster children, or any child under the control of DSS in the state of Massachusetts."
It works like this: Boston Children's Hospital needs guinea pigs and the Massachusetts DCF provides them.
Rep. Bachmann was joined by Reps. Karen Bass, D-Calif., Tom Marino, R-Pa., and Jim McDermott, D-Wash., the co-chairs of the Foster Youth Caucus, to introduce this bipartisan legislation that will prohibit federal funding for medical experimentation on any ward of the State.
Mark Trammell is with Liberty Counsel Action (LCA). He and LCA led the charge to get the legislation introduced, and will likewise lead the charge to get it passed.
"The purpose of this bill is to protect children, plain and simple," said Trammell. "This is not about partisan politics, it's about advocating for the health and safety of children. It is irresponsible and inexcusable to subject foster children, or any child who is a ward of the state, to medical research that presents a greater than minimal risk of harm to the child with no prospect of direct benefit. These are children, created in the image of God; they deserve to be treated that way, not like human lab rats.
"We are thrilled to see bipartisan support for this bill," Trammell added. "Liberty Counsel Action is proud to support Justina's Law and commends Rep. Bachmann, Rep. Bass, Rep. McDermott, and Rep. Marino for their compassion and collective leadership in protecting the rights of foster children – in protecting all children."
In a statement late Friday, Rep. Bachmann observed, "Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states. Not all these children have families like the Pelletiers willing or able to advocate on their behalf. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step."
The bill's co-sponsors, Democrats and Republicans alike, weighed in with similarly strong statements.