Wednesday, March 1, 2017

Gottesfeld on Pelletier

For those unfamiliar with the Pelletier case, in February 2013, Linda and Lou Pelletier, parents of four daughters, brought their youngest: Justina, to Boston Children’s Hospital (BCH.) They had a referral to see her gastroenterologist. The specialist had just moved his practice there from Tufts University Medical Center across the city where Justina’s other doctors remained. Both Justina and her older sister have mitochondrial disease, a usually genetic condition known to run in families. It is often degenerative, progressive, and fatal, especially when left untreated.

When they arrived at the BCH emergency room though, their referral was not honored and Justina was instead seen by Jurriaan Peters, a resident who had graduated from a foreign medical school and completed medical his medical training seven months earlier. Peters took it upon himself, with no request from the Pelletiers, to investigate Justina’s diagnosis. He called in non-M.D. psychologist Simona Bujourneau for a consult. From there, the two practitioners developed a competing theory, that Justina’s problems were mental rather than physical, and therefore her various treatments for mitochondrial disease, or “mito” as it is commonly called, were unnecessary and even harmful.

They asked Linda and Lou for permission to stop Justina’s medications. Fearing for their youngest daughter’s life, they refused and tried to discharge her, having never been allowed to see the specialist they came for. They wanted to bring her back to her original doctors at Tufts, who were renowned for their decades of experience, knew Justina’s case well, and had been treating her for over a year. Justina’s mother and father, Linda and Lou felt it was their decision but the hospital has a way around parental rights.

They call it a “parentectomy.”

Boston Children’s refusal to discharge Justina who was 14 years old at the time. With hospital security approaching from all sides, the Pelletiers called the cops, but when the police arrived, they escorted Linda and Lou off the premises without their youngest daughter. They were told to show up in court the following day for a custody hearing.

Armed with the truth, Linda and Lou were heartbroken at the proceedings the next day. The hospital and state presented false and misleading information about them and their daughter’s illness. Over their vocal objections the Massachusetts judge sided with BCH and the Commonwealth, stripping Linda and Lou of custody and upholding the new treatment plan. Boston Children’s remained in charge of Justina’s medical decisions. Incredibly her parents were banned from even discussing her condition and care with her during their one-hour supervised weekly visits….

Outraged, Linda and Lou went to every authority they could think of, but no one from the Boston Police to the district attorney’s, governor’s, or attorney general’s offices, nor the FBI, would help set the record straight and reunite Justina with her family.

A couple months later with Justina still a ward of the state and therefore Uncle Sam footing the $1000/day bill through Medicaid, the teen was locked in Boston Children’s now infamous psych ward, “Bader 5.” She wasn’t allowed to attend her religious services or school, and her condition began to get worse, a lot worse. Justina “celebrated” Mother’s Day and Father’s Day, as well as her 15th birthday, Christmas Eve, and Christmas, alone in that psych ward. She wasn’t even allowed to call her family on those important occasions and her birthday gifts were delivered days late, leaving her to believe she had been forgotten…

When cameras from their local Fox station and reporter Beau Berman, who would go on to win the Edward R. Murrow Award for his coverage of the case, showed up outside the court, the hospital was “up in arms” and led the judge to issue an unconstitutional gag order, illegally blocking the Pelletier’s from speaking to the media. At first they obeyed, but as Justina continued to get worse, her father risked prison, broke the order, and appeared on programs ranging from local Fox and PBS stations to The Kelly File. If he didn’t, his daughter might not be alive today.

The story went viral. Over time, Governor Mike Huckabee, Glenn Beck, Dr. Phil, The Christian Defense Coalition, and Liberty Counsel all got involved. Even Harvard’s own Alan Dershowitz, volunteered to lend a hand, noting that the law was clearly on the side of the Pelletiers. However, no one knew, if Justina’s parents would get her back in time to save her life.

Eventually, sixteen months and two birthdays after she first arrived at Boston Children’s, and due to a wide variety of mounting pressures, Justina’s father carried her back into her family’s home to stay. Today, more than two years later, she hasn’t recovered and is still in a wheelchair. She was maimed. I’m proud to have played my part in bringing Justina home and I feel it’s only fair to examine what those in the Obama administration, who then pointed the finger at me, could have done to end the travesty while Justina could still feel her legs.

First, simple phone calls from the U.S. Attorney’s office asking if Linda, Lou, and Justina’s rights were being upheld, and again we clearly know that they weren’t, could have gone a long way…
If the threat of DOJ action to protect the fundamental rights of everyday Americans wasn’t enough then actual action could have taken several forms…

Further, the DOJ has a civil rights division. One of its duties is to investigate and verify that institutionalized children like Justina actually need to be separated from their families and that they receive treatment and education in the least restrictive setting possible. The apparent justification offered by Boston Children’s for locking Justina in its psych ward was that her inability to attend to her daily needs made her a danger to herself. Not only is this wrong on its face, plenty of people receive help attending to their daily needs without being locked away, but it violates federal civil rights laws.


  1. This Kafkaesque tale, which dominated the conservative Twitter-verse, even comes pre-packaged for the right with a poster child from a relateable, underdog Christian family. The girl’s parents end up driven to bankruptcy and forced to watch, helpless, as their youngest daughter loses the use of her legs and is nearly killed, all at the expense of over a million taxpayer dollars. As told by conservatives, the narrative also includes arrogant and incorrect Harvard Doctors who are too proud to admit they’re wrong and who egregiously violate parental and religious rights, with the backing of an at best biased court in the deep blue Commonwealth of Massachusetts.

    It all began on cold, snowy, February night, when an ambulance carrying Linda Pelletier and her youngest daughter, 14-year-old Justina, arrived at the Boston Children’s Hospital (BCH) E.R. from Connecticut. For over a year Justina and her older sister had been successfully treated for a rare genetic condition known as Mitochondrial Disease or “mito” for short, by Dr. Mark Korson, a leading expert on the illness at nearby Tufts Medical Center. Recently though, Justina had taken a turn for the worse after contracting the flu, which is known to cause serious complications for mito patients. She was having difficulties walking as well as eating, and since mitochondrial Disease already interferes with the body’s ability to produce chemical energy from food, her problems were compounding.

    Dr. Korson referred Justina to BCH to see his former colleague, Dr. Alejandro Flores, a gastroenterologist who had treated her at Tufts prior to moving his practice across town to BCH the month before. Korson hoped Flores would triage the situation by helping Justina to eat.

    However, it wasn’t to be.(continued)

  2. (continued) When Justina and her mother Linda arrived at the E.R. it was 4 A.M. on a Sunday and Flores wasn’t available. Instead, Justina was seen by, Dr. Jurriaan Peters, a young neurologist seven months out of medical training.

    According to the Pelletier’s, it wasn’t long before Peters took exception to Linda’s assertiveness and declared it was “his case.” He questioned Justina’s mito diagnosis and called for a psychology consult. Then, Simona Bujoreanu PhD, evaluated Justina and seemingly rushed to the mistaken conclusion that her physical symptoms had mental causes. Specifically, Bujoreanu wrote that they were psychosomatic in nature, meaning that Justina’s perception of herself as a mito patient was causing her to experience symptoms of her disease, similar to the placebo effect.

    Based on Bujoreanu’s findings, Justina’s diagnosis was changed from mitochondrial disease, a physical condition, to somatoform disorder, a mental problem. Critics of Bujoreanu point out that she studies somatoform disorder and has authored multiple papers on the condition, potentially leading to confirmation bias.(continued)

  3. (continued) Regardless, under the new psychological diagnosis, Justina’s mito treatments were unnecessary and even harmful. However, mitochondrial disease is very painful, and can also be degenerative, progressive, and fatal, especially when it is left untreated. So when Harvard-affiliated BCH and its doctors wanted to stop Justina’s mito treatments, her parents fearfully refused and tried to discharge her.

    But BCH would’nt take “no” for an answer. Instead, the two billion dollar Harvard teaching hospital reported Justina’s family for suspected “medical child abuse,” touching off a bitter 16-month custody battle that pitted Boston Children’s and the Massachusetts Department Children & Families (DCF) against the Pelletiers. Initially, it was a one-sided conflict arbitrated by Commonwealth Family Court Judge Joseph Johnston, who was quick to side with the hospital and state but slow to accept the possibility the Pelletiers had been right all along.

    Backed by DCF and Judge Johnston, Boston Children’s restricted Justina to a single-hour long weekly visit with her family, supervised by armed officers. The Pelletiers weren’t allowed to seek second opinions nor discuss Justina’s treatment with her. She never saw Flores or Korson at BCH. Exacerbating the situation further, she also wasn’t allowed to attend Mass, take Communion, or go to Confession.

    It didn’t take long for evidence to surface contradicting the new BCH diagnosis. For example, Boston Children’s had specifically cited Justina’s feeding tube and cecostomy button as potentially unneeded and medically abusive, but almost immediately after the Pelletier’s lost custody of Justina, the hospital changed it’s tune and determined both to be necessary.

    Over the subsequent months, without her mito treatments, Justina’s family reported she deteriorated rapidly. They told media outlets she was in constant severe pain, that her hair was failing out, her gums were receding, and that she went from figure skating, to having difficulty walking with the flu, to losing all feeling below her waist after BCH stopped her medications. When a local Fox reporter showed up at the courthouse, Judge Johnston issued a gag order forbidding the Pelletiers from speaking to journalists. Unable to tell her family what was happening to her in their supervised visits, Justina took to smuggling them notes hidden in art projects...

    In the face of growing public scrutiny, the hospital and State dug in their heels in an apparent effort to avoid admitting they had been wrong, elongating the scandal and the damage to Justina. By the time she went home, the head of Massachusetts DCF had resigned in disgrace and conservative estimates put State spending on Justina’s treatment for the BCH diagnosis at over 1 million dollars—all for a condition she likely never had. Finally, with the Pelletiers on the verge of bankruptcy and Justina on the verge of death, Judge Johnston begrudgingly gave custody back to the family in June 2014, some 16 months after the hospital originally changed her diagnosis.

    Unfortunately, Justina has never recovered from the ordeal. She still goes to counseling to cope with the emotional trauma and still requires a wheelchair. After their experience, The Pelletier’s went to Washington D.C., where nearly three dozen congressmen co-sponsored “Justina’s Law,” an effort to stop federal money from being used for similar purposes in the future.

    If they wanted to, conservatives today can easily cite the case as a growing example that when it comes to health care the state doesn’t always know best and that more money doesn’t always equate to outcomes. One could even foresee an argument that DCF, BCH, and Judge Johnston were very nearly a death panel for Justina. Regardless her case clearly underscores the inadequacy of the status quo.

  4. Their story centers on Justina Pelletier, who has a rare blood disease. Back in 2013 the hospital diagnosed her symptoms as psychological, and blamed her parents. She was taken into custody and reportedly didn’t receive essential medical aid. This, according to her parents, amounted to torture.

    “She went from a healthy-as-could-be young lady to a person in a wheelchair, pretty much paralyzed below the hips. Now they [the hospital] are basically admitting after 13 months they were wrong. She’s been in severe pain, non-stop, for 13 months,” Justina’s father said during a TV interview back in 2014.

    Through hacking the hospital’s network, Martin says he planned to reveal the details of Justina’s story.

    He and Dana told RT that anyone attempting to expose events like this should be hailed as a hero – but it’s quite the opposite, with the innocent being punished, they say.

    Dana was speaking to RT live, holding a phone with Martin on the line, who was speaking directly from prison.

    “I don’t think that I should be charged in the first place. Misleading statements have been used to strip a family of custody of their child. The family was subjected to an unconstitutional gag order, they were prohibited from speaking to the press, contrary to the beloved [US] First Amendment here. That was blatantly unconstitutional,” said Martin.

    His time in prison “violates just about every international human rights accord,” Martin added, speaking via the phone held in his wife’s hands.

    “I think that the charges I’m facing are 100 percent political and an attempt to indemnify torture,” the activist said.

    Dana said she agrees with her husband, “in the way that this is such a miscarriage of justice. There is no prosecution, there is no investigation into the hospital and what they did to Justina. And instead, they punish people that are trying to expose it and protect children.”

    The conditions that Martin are kept in are tough. “I’ve been to six prisons in the past year: four federal facilities, one private, and am currently in a county jail.”

    The activist noted that he had observed human rights violations at all the facilities.

    Martin has filed several complaints to the Department of Mental Health, “but they are abdicating any responsibility [for human rights violations],” he said.

    “A lot of the people here are mentally ill, but they don’t possess the mens rea, the mental ability to knowingly commit a crime. So these people can’t knowingly commit a crime, but yet, they are being tortured in the same building,” the activist added.

    Martin himself was denied bail to attend his father’s funeral, which was “really hard to see,” Dana said.

    “I took an emergency trip down to Florida from Massachusetts. Marty is only allowed on the phone at certain times, and I got there just a few minutes before the phone shut off. And Marty was able to talk to his dad for the last time, for just a couple of minutes. It was really close, and I’m happy that I was able to do that,” Dana added, with tears in her eyes.

    “Missing my dad’s death, missing my dad’s funeral, facing 25 years in jail… Wow! These people continue to torture and kill children with impunity… A heavier price than I was prepared to pay,” Martin added.

    “It’s so upsetting for all of the people who don’t have a voice there, and my husband isn’t recognized for the good work, but instead is punished for it,” Dana concluded.