Bipartisan Members of Congress File “Justina’s Bill” To Stop Medical Trials on Wards of the State

In Massachusetts, Marc Lombardo and Jim Lyons were put on a virtual island by the power brokers on Beacon Hill when they tried to get legislation passed to free Justina Pelletier from Boston Children’s Hospital’s clutches. Even members of their own party, Sheila Harrington (R-Groton) to be exact, took to the floor of the house to say that the Pelletiers were abusing their child.  

A bipartisan group of federal lawmakers are taking what happened to the Pelletiers very seriously and are taking steps to ensure that it doesn’t happen to other families.  There is a very strong belief by many people that the major reason that Justina was taken from her family was so that Boston Children’s could complete a National Institutes of Health Study on Somatoform Disorder.  A study that they were having trouble finding people to enroll for.  

To that end four bipartisan Members of Congress have introduced “Justina’s Law”, which would stop federal money from being used for research on wards of the state.  The press release from Michelle Bachmann explains it all:

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.

After the jump are quotes from the members…

“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)

The four Members of Congress above are from across the political spectrum.  Wouldn’t it have been nice, if in Massachusetts, where this is happening our legislators would have publicly stood up for the Pelletier family, instead of demonizing them – like Sheila Harrington did from the floor of the House?

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