Following the incarceration of Justina Pelletier at state institutions for 16 months, four members of the United States House of Representatives are set to introduce bipartisan legislation that will prohibit the federal funding of medical experiments on wards of the state. Nicknamed Justina’s Law the bill has been drawn up by two Democrats and two Republicans following what Justina’s father, Lou Pelletier has labeled a “mad psychiatric experiment” on his daughter.
Last night Justina, together with her parents Lou and Linda Pelletier and her three sisters, Jennifer, Jessica and Julia, appeared live with Mike Huckabee on his popular weekend talk show hosted by Fox News. Huckabee is one of several media personalities who have championed Justina’s rights over the past months in an endeavor to force the State of Massachusetts (MA) to release her from the custody of the MA Department of Children and Families (DCF) following a court order last year. Lou Pellitier told the television audience, “It was all a mad psychiatric experiment.” Justina, in turn said nobody should ever be “put through” what she has been put through.
They were so mean and nasty to me, and mean and terrible to my family also. Justina Pelletier
The Controversial Re-diagnosis of Justina Pelletier
Justina was admitted to Boston Children’s Hospital (BCH), Massachusetts in February last year after contracting flu that had made her severely ill, dehydrated and unable to eat. Already diagnosed by doctors at Tufts as having the very rare mitochondrial (mito) disease, the then 14-year-old was re-diagnosed at BCH by doctors and psychiatrists who insisted it was all in her head and that she was in fact suffering from Somatoform Disorder.
When her parents refused to accept the new diagnosis and sign approval of it, the hospital called in the DCF that took instant legal action and had her declared a ward of the state. They also charged the Pelletiers with “medical child abuse,” stating that they had over-medicated their daughter, in spite of the fact that they were following instructions from reputable doctors at the renowned Tufts Medical Center. The hospital withdrew all her medication, refused to allow her to continue at school, and would not permit her to even go to church, in spite of the fact that the family is very religious.
From being an active figure skater in December 2012, she is now in a wheelchair and cannot stand or walk without help. But after living a life of hell for 16 months, Justina was carried back into the family home in Connecticut on Wednesday last week by her father. At last they were out of what Lou Pelletier described to Mike Huckabee last night as “this Alice in Wonderland rabbit hole.”
BCH Allowed to do Research on Wards of the State
In BCH’s The Clinical Investigation Policy and Procedure Manual that details policy for wards of the state at the hospital, the first clause states: “Children who are Wards of the state may be included in research that presents minimal risk…” It also 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…”
There are additional clauses in the three-page document that Guardian Liberty Voice has in its possession. This includes the need for approval from the DCF Research Proposal Review Committee before research may begin. Parents of children who are Wards are not consulted and their permission for their children to be “guinea pigs” is not required.
The new bill that has been introduced, H.R. 4989, is aimed at all US hospitals like Boston Children’s because of this very policy that allows patients who are legally Wards of the State to receive whatever treatment the hospital deems fit, or be part of a research program. The four representatives (reps) behind the bill are Republicans Michele Bachmann representing Minnesota and Tom Marino representing Pennsylvania, and Democrats Karen Bass representing California and Jim McDermott representing Washington State.
In a press release issued on Friday June 27, the four reps each made a statement:
• Rep. Michele Bachmann said it was their duty to ensure children were “kept safe from harm while in the custody of their respective states.” Not all families were willing to advocate on the children’s behalf like the Pelletiers had done, she said. What happened to Justina Pelletier was “unconscionable” and it was essential “to prevent it from ever happening again.” The first step would be to remove federal funding that would allow “such experimentation” in future.
• Rep. Tom Marino pointed out how “lucky” Justina Pelletier was to have parents who had fought so hard for her and “leveraged the support of the media and public officials.” He was supporting the other three reps, he said, because it was vital that no child “should be subject to medical experimentation under the legal designation as ward of the state.”
• Rep. Karen Bass said children should be cared for and loved and not “experimented on.” The bill, she said would “make it clear that children are blessings, not guinea pigs.”
• Rep. Jim McDermott highlighted the “strength and bravery” of Justina Pellier and her family, calling it “a guidestar” for the nation. It was their responsibility to make sure children were not the “subject of risky medical experimentation,” he said and for this reason he was working with the other three reps “to pass Justina’s law as quickly as possible.”
Highlights of the Huckabee Interview
Probably the biggest highlight of the Huckabee interview last night was the declaration that Justina’s Law would “cut off any funding” to organizations that experiment on children without their family’s permission. This, Huckabee told Justina and his studio audience was “what we hope for.”
Oh my gosh that is awesome. Justina Pelletier
It was not a long interview, but it was a happy one, unlike the many that had gone before. First Mike Huckabee spoke to Justina. Holding her hand tightly he asked her if she knew that so many people had been praying for her. She simply nodded and said that it had made her “feel so much better” and had helped her through the ordeal. Asked what the hardest part had been, she said it was not being able to be with her family, reminding the audience that she was only allowed one telephone call per week, for 20 minutes, and strictly supervised by the DCF whose officials would not allow her to talk about things that were meaningful to her (for instance her health).
Justina Pelletier told Mike Huckabee that all she knew was that the DCF had taken custody of her, and that her family could not talk to her because they had been “over-medicalizing” her – “which they were not.” She said it had been “very scary” because there was no-one on her side and no-one at BCH believed what she said. They stopped all her medication because “they all though I was faking this medical stuff.” She said they also tried to insist that her condition was improving when it was not.
I love my family so much; I cannot believe I am home with them. Justina Pelletier
Linda Pelletier, Justina’s mother was next. She said she had worried all day, every day not knowing what the medical team at BCH was doing to her daughter. She discovered that Justina had had pneumonia on two occasions when a doctor called her to report, “she (Justina) is really was not doing well.” Linda still cannot fathom “why they did this; there is no explanation.”
Lou Pelletier who earlier this year broke a gag order not to speak to the press, taking his daughter’s plight to every media person and television station willing to listen, said it had been like fighting a “two-headed Goliath” in the form of Harvard Medical School, “the wealthiest college in the land” and BCH which is owned by Harvard. “It was all a mad psychiatric experiment. They said we were jeopardizing her by not following the BCH protocol, which was to take her off all her medications because what she had was all in her head.”
Lou Pelletier has said it before publicly, and he said it again, “Diagnosis of Somatoform takes over a year to diagnose and it is one of the most nebulous diagnoses there is.” Yet the doctors at BCH made this controversial diagnosis 12 hours after she had arrived at the hospital, and after only a 25-minute interview, he said. His explanation was that Somatoform is the “pet project” or specialty at BCH. “They do it because they can.”
They had their own agenda; and that’s a sad thing. Lou Pelletier
And then the sisters had their turn. Jennifer, the oldest, said she was “a bit shocked” when Justina telephoned suddenly last week to say she was allowed to go home. “It is fantastic to have her back home where she belongs.” Jessica, who as also been diagnosed with mito said she was “beyond shocked.” Julia, the youngest of the four, who has happily gone back to sharing a bedroom with Justina, said she was just longing to get “back to normal.”
The best for Justina Pelletier is that she will be starting school this week and is now able to spend time for her friends and beloved family. “Later I will be ice figure skating again,” she told Huckabee optimistically. Now aged just 16, the teenager who was part of a “mad psychiatric experiment” stands to have Justina’s Law named after her to ensure that nothing like this ever happens to an American citizen again. The Pelletier family concedes it is going to be a long road, but it is one they are happy to be going down it together.
By Penny Swift