|Justina's father carries her home after her 16-month incarceration|
Justina's Law would bar federal funding of any institution that uses wards of the state for medical experimentation. On the surface, this appears to be a law fraught with loopholes. It is possible that mental hospitals could justify forced psychiatric treatment on the grounds that it is usual and customary.
Usual and customary treatment for all mental illnesses (other than schizophrenia, bipolar disorder, and psychosis) consists of therapy (e.g. CBT), sedatives, and/or antidepressants. These are not actually treatments, because there are no objective tests for mental disorders. That is because the majority of mental disorders are not illnesses; they are simply reflections of social conventions and cultural norms of the time. Given the lack of any scientific evidence for the existence of somatoform disorder - an antiquated diagnosis left over from Freudian psychiatry - it would be a stretch to claim that its treatment is anything but experimental.
The treatment Justina was given throughout her stay as a ward of the state was not approved by Justina's parents, who have consistently maintained that the state of Massachusetts experimented on their daughter. Justina's previous diagnosis of mitochondrial disease (an inherited condition also suffered by her sister) was disputed by a neurologist at Boston Children's Hospital. The neurologist re-diagnosed Justina with "somatoform disorder." Her parents were then accused of "medicalizing" her illness. Over the next year, Justina was refused medication for mitochondrial disease, and placed in a locked mental ward. Eventually, the state moved her to foster care. During the 16 months she was a ward of the state, Justina's condition deteriorated until she could no longer walk or stand.
Justina's Law, if passed, could have profound ramifications for the ME/CFS community. Hundreds of children with ME/CFS have been taken from their homes on the basis of psychiatric diagnoses that are just as unsubstantial as somatoform disorder. This law would give legal grounds to parents suing to get their children back. It might even help get some of these pseudo-psychiatric "diagnoses" relegated to the dustbin of history, which is where they belong.
Please ask your representatives to support H.R. 4989, "Justina's Law."
Find your representatives here.
You may use this letter as a template.
Please support H. R. 4989, "Justina's Law." Justina Pelletier was incarcerated by the state of Massachusetts for over a year based on a psychiatric diagnosis for which there is not one shred of scientific evidence (somatoform disorder). As a result, Justina's disease (mitochondrial disease, a rare inherited disorder) has progressed, and she is no longer able to walk. Justina is not the only child to have suffered this fate. In 2009, Ryan Baldwin, a boy with myalgic encephalomyelitis (aka chronic fatigue syndrome) was taken away from his family in North Carolina and placed in foster care, where he grew steadily worse.
Please prevent more cases like Justina's and Ryan's. Support "Justina's Law."
Reps. Bachmann, Bass, Marino, and McDermott Introduce “Justina’s Law”
Michele Bachmann, Jun 27, 2014
Washington, D.C. -- Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), the co-chairs of the Foster Youth Caucus, to introduce bipartisan legislation that prohibits federal funding for medical experimentation on a ward of the State.
The bill, H.R. 4989, nicknamed “Justina’s Law”, is a response to the recent case of 16-year-old Justina Pelletier, who was finally released from Boston Children’s Hospital (BCH) back to the care of her family after a 16-month custody battle between the Commonwealth of Massachusetts and Justina’s parents.
BCH and many other hospitals have an internal policy that allows for children who are deemed “wards of the State”, including foster children, to receive treatment or be involved in research that presents great risk even if there is no prospect of any benefit to the child.
“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.” – Rep. Michele Bachmann (MN-06)
"Children need to be loved and cared for, not treated as something to be experimented on. Foster children are particularly vulnerable because they may not have parents to advocate for them. This bill will make it clear that children are blessings, not guinea pigs." – Rep. Karen Bass (CA-37)
“The bonds between children and parents is sacred. The closeness and level of intimate understanding between them transcends our societal constructs. In Justina’s case, she was kept from her loved ones and essentially detained by the hospital and the state. She was lucky to have parents that fought for her and leveraged the support of the media and public officials. Yet too many children do not have parents to speak for them and look out for their health and best interests during times of physical and emotional vulnerability. That fact saddens me. It would sadden any person who knows the power of love and affection. That is why I am proud to support Reps. Bachmann, Bass, and McDermott on this legislation because no child, with parents or not, should be subject to medical experimentation under the legal designation as ward of the state.” – Rep. Tom Marino (PA-10)
“The strength and bravery that Justina Pelletier and her family have shown in the face of incredible hardship is a guidestar for us all. We must act to protect and cherish children in the care of a state and make sure that they are not the subject of risky medical experimentation. I look forward to working with Reps Bachman, Bass, Marino and countless other colleagues from both sides of the aisle to pass Justina’s law as quickly as possible.” – Rep. Jim McDermott (WA-07)
Click here to view the full text of H.R. 4989.