Final Thoughts on the Justina Pelletier Case

The courts are not to determine which side of a medical dispute is sound where each side is supported by reason and logic.
Sevigny’s Case, 337 Mass. 747 (1958)

 

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In what appears to be the most promising development of the last 15 months, Justina Pelletier was transferred by ambulance on Monday to the Justice Resource Institute’s Susan Wayne Center for Excellence, in Connecticut.

In stark contrast to her treatment at Wayside in Massachusetts, Justina was allowed extended visitation with all of her family members.

“I went in kind of skeptical as far as what I was expecting from Mr. Andy Pond, the CEO, but I came out of here very, very optimistic,” said Lou Pelletier, according to Beau Berman’s report.

A statement from JRI’s CEO was released late last week. That statement said, in part:

While JRI is not empowered to make placement decisions, our philosophy of family empowerment, our skilled staff, and our track record of family engagement make us a good choice for reunification. Our program respects the privacy of each individual we serve, which is afforded under the federal HIPAA law as well as other federal and state laws, and therefore we will not provide any specific information on any individual’s care or treatment.

Justina’s mother, father, and three sisters visited her inside the facility, and her father said he and his wife, Linda, are now allowed nearly unlimited unsupervised visitation of Justina at the facility in Thompson, according to Berman’s report.

“For now, we’re going along with it. She’s gotten out of that wayside facility where she’s been 4 months now. So now she’s at least in the state of Connecticut and hopefully this is her last stop and hopefully a short one before she’s home in West Hartford,” said Lou Pelletier.

Let’s hope that Mr. Pond lives up to his reputation, and that he facilitates the reunification of the family. He’s certainly a far better diplomat than any we’ve seen up to this point.

An announcement was made on A Mircale for Justina – the family’s Facebook page – asking supporters not to criticize the new facility. No protests are planned at the new location.

Those who love a protest rally take heart. Boston’s popular radio talk show host, Jeffrey T. Kuhner, who describes himself as “Liberalism’s Worst Nightmare,” will be organizing a large rally in support of Justina. The latest information available from the Justice for Justina Facebook page regarding the rally is that it is to be held at the state house in Boston 2-4 pm on Saturday, the 24th.

THE LINGERING QUESTIONS

Serious questions remain about at least two other children that were said to have been admitted to Boston Children’s Hospital last year. “I know personally of two other families who also are under a gag order by Boston Children’s Hospital,” said Cristy Balcells during an interview last November.

Unless and until someone with more information regarding those two cases comes forward, we may never know what their outcomes may be. We don’t know whether the families are adequately represented, or whether their children have since been released. Many troubling questions still remain unanswered about the whole affair at BCH.

In the absence of complete information, it is tempting to speculate, but this much is known. When Beth Maloney was asked what she thought was going on, she candidly replied that she didn’t know for certain, speculating that it may be a question of egos at work.

She added, however, that in both of the two cases she’d handled, Boston Children’s Hospital did the same thing that it did to the Pelletier family. Specifically, what she said was: “It’s not just Mitochondrial childen that they go after. I’ve had two children with an autoimmune disorder that effects the brain, and they did the same exact thing; diagnosed the children with somotaform disorder. There is a psychologist at Boston Children’s Hospital who is very invested in that – Somatoform disorder – she’s written papers about Somatoform disorder.”

Are young residents actually allowed such broad and sweeping powers? The answer is that it would certainly appear to be the case. According to a document on Boston Children’s Hospital’s web site, Child & Adolescent Psychiatry Residency Training Program, which appears to be provided to all new residents in psychiatric training, and which is signed by David R. DeMaso, the unique training goals of rotation in the Psychiatry Inpatient Service program

are to teach residents to evaluate and manage children, adolescents, and their families, who present with severe psychiatric illnesses, or co-morbid medical-psychiatric illnesses, requiring care in a more restrictive inpatient setting. In this setting our residents function as the primary clinician for two patients. This involves all aspects of patient care, from family, to individual, to pharmacotherapy. They also provide medication management for two additional patients. During this four-month rotation residents receive supervision from their team attendings and staff social workers, as well as from the medical director.

In terms of framing the bigger picture, what we do know is that Children’s Medical Center Corporation, the company that runs Boston Children’s Hospital as a subsidiary, is tax exempt as a learning institution, according to the Company Overview provided by Bloomberg BusinessWeek. According to the company’s 990 filings, maintained by the good folks at CitizenAudit.org, as of 2013 the company claimed total assets of $2,052,394,841 and net assets of $531,913,049.

According to Bloomberg BusinessWeek, one of the “key developments” worthy of note regarding the corporation is that on Noverber 6, 2013:

Pollack Solomon Duffy LLP announced a lawsuit filed in Suffolk County Superior Court against Children’s Hospital Boston and several of its healthcare providers, by the Swiss mother of a 14 year-old girl allegedly confined for six weeks in 2012, separated from her mother and inadequately protected from a Haverhill woman allegedly the source of Xanax on which the girl overdosed. When finally discharging the girl, Children’s Hospital returned her to the woman whose Xanax was the source of the overdose. Approximately six months passed before Claudia Felder, the girl’s mother, recovered her daughter through a petition in Federal Court in Massachusetts under the Hague Convention on the Civil Aspects of International Child Abduction.

The Bloomberg BusinessWeek profile continues on to explain: “As alleged, when Felder refused to pay for services while demanding her daughter’s return to Switzerland, Children’s Hospital supported the Haverhill woman’s efforts to separate the girl and her mother. The civil action includes claims for negligence, interference with custody rights, and loss of filial consortium.”

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We know also what the policy is regarding wards of the state. Document: CIPP 071.001.19, from The Clinical Investigation Policy and Procedure Manual at Boston Children’s Hospital, details the facility’s policy with regard to “Wards of the State.” According to the definition provided in the document: “A ward means any child who has been adjudged dependent by a court and who is under the care or custody of a public official or agency, including foster children, or any child under the control of DSS in the state of Massachusetts. This also applies to children in penal custody or otherwise detained within the criminal justice system.”

There is a specific procedure in place just for such contingencies. Once a child becomes a ward of the state by virtue of a 51A filing and a subsequent rubber stamp by a juvenile court judge, the Department of Children and Families makes all of the decisions. The parents are relegated to the role of being mere nuisances to be kept handily out of the way. The document clearly explains the procedure following a parentectomy:

The Commonwealth of Massachusetts requires that they review and approve all requests for individual Department of Children and Families clients to participate in research. This includes children who are in DSS care or custody. This review is conducted by the Department of Children and Families Research Proposal Review Committee. Investigators are required to complete and submit the appropriate forms in order for this review to occur. No research may begin with a particular ward until approval is obtained.

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It is easy to dismiss this document out-of-hand by saying that just having a policy in place does not necessarily mean that it is being implemented.

A thoughtful researcher provided a document from the Massachusetts Department of Public Health, entitled Conduct of Human Subject Research, as last revised April 15, 2013.

While the document does provide some meager procedural safeguards, there is no practical way to ensure that they are enforced. And, with DCF making the critical decisions, some may question whether the best interests of children are indeed being served. The document states, in part:

Children who are wards of the State or any other agency, institution, or entity can be included in research approved under 45 CFR 46.406 and 45 CFR 46.407 only if such research is: 1) related to their status as wards; or 2) conducted in school, camps, hospitals, institutions, or similar settings in which the majority of children involved as participants are not wards. If the research meets the criteria above, the IRB requires the appointment of a participant advocate for each child who is a ward, in addition to any other individual acting on behalf of the child as guardian or legally authorized representative. One individual may serve as an advocate for more than one child. The advocate must have necessary expertise and experience, and agree to act in the best interest of the child. Only those advocates without any conflicts of interest can be appointed as advocates.

Naturally, all of this is concealed not only from the public, but from the parents as well. For that purpose, DCF has its near-impenetrable cloak of confidentiality, and the medical facility has the HIPPA regulations to hide behind.

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To the extent that DeMaso has considerable influence in the community outside of the ivory towers, he and Joseph Gold, M.D. co-authored An Adolescent Mental Health & Wellness Curriculum: A Starter Kit for Schools, which in its essence is a series of mental health screening tools intended to be used on the student population.

School personnel are specifically cautioned to anticipate parental resistance to the prescription of medications intended to “treat” the mental health needs identified by the screening instruments, as the Curriculum itself explains: “Prescribing antidepressants may be resisted by families distrustful of the use of medications and disconnected from the Western medical system.”

Indeed, the Curriculum goes so far as to say “there may be varied responses from parents based upon differing culturally-based viewpoints on mental health, the role of schools, the rights of parents, and family boundaries and privacy.” However, as the Curriculum explains:

Parental resistance is not a reason to abandon the course you have chosen in addressing student mental health, but should be used as an important opportunity for opening a meaningful dialogue with the families of your students. In fact, we suggest that you should expect resistance of some sort – it is reasonable for parents to have questions about how mental health issues will be addressed by a school, or by any professional. Anticipating the questions and concerns parents will have is another part of the internal staff process you can engage in, and responses should be built in to your evolving implementation plan.

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Finding an affirmative link between David DeMaso and DCF was somewhat problematic, however there is one to be made. The February 2010 issue of Department of Children & Families Monthly Update speaks glowingly of “Building Bridges to Understanding,” a program intended to create a “case based training” approach to psychotropic medications administered to foster children. As the article explains, “The training is unique in that it borrows from a model developed by Dr. DeMaso, and that is geared to teaching practicing physicians.”

The DCF article explains: “With the help of Heather Walters, Chief of Child Psychiatry at Boston Medical Center and David DeMaso, Chief of Psychiatry at Children’s Hospital, a very specific curriculum was developed to address these concerns.

We know also that three Harvard psychiatrists were accused by Senator Chuck Grassley of accepting money from drug companies, and that they were reprimanded for violating conflict of interest polices set forth by Harvard Medical School and Massachusetts General Hospital. According to the Congressional Record of the proceedings, Senator Grassley explained that his staff experienced great difficulty in obtaining answers to his questions, however in March of 2008,

Harvard and Mass General asked these doctors to take a second look at the money they had received from the drug companies. And this is when things got interesting. Dr. Biederman suddenly admitted to over $1.6 million dollars from the drug companies. And Dr. Spencer also admitted to over $1 million. Meanwhile, Dr. Wilens also reported over $1.6 million in payments from the drug companies.

The question you might ask is: Why weren’t Harvard and Mass General watching over these doctors? The answer is simple: They trusted these physicians to honestly report this money.

The key to understanding the significance of all this was explained by New York Times columnist Gardiner Harris, whose article explained:

Dr. Biederman’s work helped to fuel a fortyfold increase from 1994 to 2003 in the diagnosis of pediatric bipolar disorder and a rapid rise in the use of powerful, risky and expensive antipsychotic medicines in children.

Although many of his studies are small and often financed by drug makers, Dr. Biederman has had a vast influence on the field largely because of his position at one of the most prestigious medical institutions.

Joseph Biederman, Thomas J. Spencer, and Timothy E. Wilens, ultimately issued a letter of apology to their colleagues, stating that the two institutions had concluded a review of their practices and found that they had violated conflict of interest policies requiring affiliates to report industry-sponsored activities to the University.

The Johnson & Johnson Center for the study of pediatric psychopathology at Massachusetts Medical Hospital, where Dr. Biederman served as chief, said in its 2002 annual report that its research must satisfy three criteria: improve psychiatric care for children, have high standards and “move forward the commercial goals of J.& J.”

Here is where it gets much more interesting. In order to market a medicine, you have to have a disorder to treat. This was Biederman’s forte, as the annual report explains:

Equally important to effective use of medications is the demonstration of the validity of disorders. Because parents, patients and clinicians are exposed to a media that frequently questions the validity of childhood disorders, genetic and brain imaging studies are needed to show the validity of these disorders as brain disorders that respond to medication.

These and other documents obtained during litigation unambiguously reveal that big pharma is inextricably intertwined with some very influential people residing in the ivory towers at Harvard, and elsewhere.

On November 4, 2013, the U.S. Justice Department announced that Johnson & Johnson was to pay out more than $2.2 Billion to resolve criminal and civil investigations related to its off-label marketing of the prescription drugs Risperdal, Invega and Natrecor.

According to the Justice Department’s press release, “The global resolution is one of the largest health care fraud settlements in U.S. history, including criminal fines and forfeiture totaling $485 million and civil settlements with the federal government and states totaling $1.72 billion.”

On November 12th, 2012, attorney Jim Ianiri posted his accounts of what he described as the “dark side” to Boston Children’s Hospital. His accounts are entirely consistent with those of others who are familiar with the Bader 5 unit of the Hospital.

Just long has this been going on? At least half a decade, according to the testimony of Kimberly Castro before a Connecticut committee. Her daughter, Chelsey Cruz, died as a result of unwarranted state intervention, as she explained to the committee:

We sought help from the Boston Children’s Medical Center. And at first, they agreed and began to wean her off the medications. She began to look and feel better. However, one fatal visit occurred when a chief doctor came on the scene. He demanded that Chelsey be put back on the experimental medications and threatened to call DCF if I resisted. I asked to seek a second opinion and was immediately dismissed. My daughter was forcibly admitted and guards were placed outside her door, keeping me from my child.

Massachusetts Department of Social Services and the Department of Children and Families in Connecticut worked to entrap us, and an order of temporary custody was obtained in Boston. I was told by the Boston Department of Social Services that I was no longer able to make any medical decisions for Chelsey. I went to the local newspapers with my story, sharing my pain and my hope to gain justice.

Most unfortunately, it recently came to my attention that Kimberly Castro passed away without the benefit of knowing that her story had gained wider circulation, and that there was a growing body of people that wanted to reach out to her offering some words of consolation.

FINAL THOUGHTS

In a previous posting, I had analyzed some of judge Johnston’s custody rulings, as they managed to wind their way up to appeals. By all accounts, Dr. Korson was present in the courtroom during a critical stage of the proceedings, and he provided testimony regarding Justina’s diagnosis. The judge disregarded Dr. Korson’s expert testimony, ruling that there was ample evidence before him to conclude that Justina suffered from a severe Somatic Symptom Disorder. The judge should not have rendered this ruling, as it stands in direct contravention to Massachusetts case law.

To the extent that there is any discussion regarding whether or not a judge should act as a referee to resolve conflicting medical debates, there should be no such discussion, as: “The courts are not to determine which side of a medical dispute is sound where each side is supported by reason and logic.” Sevigny’s Case, 337 Mass. 747 (1958).

A Rule was established by the Centers for Medicare and Medicaid Services on February 8, 2013, requiring applicable manufacturers of drugs, devices, biologicals, or medical supplies covered by Medicare, Medicaid or the Children’s Health Insurance Program to report annually on certain payments or transfers of value provided to physicians or teaching hospitals. In addition, applicable manufacturers and applicable group purchasing organizations are required to report annually certain physician ownership or investment interests.

This information is to be posted a public Web site. It is hoped that greater transparency may follow as a result.

They made a movie out of what Bob Woodward and Carl Bernstein of The Washington Post did in 1972 – remember that? A tip of the proverbial hat to Beau Berman for reminding journalists everywhere that breaking stories wide open is still what the public expects them to do. He stands nominated by the National Academy of Television Arts and Sciences, Boston / New England Chapter, for the 2013 Emmy Award Nomination for Best Investigative Reporter.

Hat’s off also to the Boston Globe for their coverage. The Globe’s superb video, “A medical collision with a child in the middle,” is currently on Youtube. Be sure to watch it if you haven’t seen it yet.

They also made a movie in 1973 about a whistle blowing cop by the name of Francesco Vincent Serpico. Al Pacino was nominated for the Oscar for his portrayal of the former New York City cop whose whistle-blowing led to the formation of Mayor Lindsay’s Knapp Commission. An honest cop in a big city, and it’s such big news that it makes the big screen.

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Former Boston Children’s Hospital nurse Katie Higgins, who followed the Pelletier case from the start, wrote a scathing letter on January 8, 2014, addressed to Massachusetts Gov. Deval Patrick, Attorney General Martha Coakley, and Massachusetts Department of Children and Families Commissioner Olga Roche.

Her letter charged that Children’s Hospital is guilty of committing “medical child abuse” by pulling Justina off most of her previous medications for mitochondrial disease. Higgins also asserted that Justina’s health had deteriorated as a result.

Higgins wrote: “As advocate for the family, I informed Department of Mental Health licensing director, Liz Kinkead of the breach of law regarding Justina’s commitment to a locked psychiatric unit and was told that DMH was deferring to the medical expertise of Boston Children’s Hospital.”

Nurse Katie Higgins put her livelihood on the line to do the right thing. It takes tremendous courage to do something like that. It takes a Serpico-kind of courage to do that, particularly when confronting such a well-insulated institution as Harvard.

In 1986, Alison Taylor, a children’s home head in North Wales, approached authorities to complain about violence by staff to children in residential care. She had previously tried to raise the issue with a number of her superiors, but to no avail. A police investigation was carried out, however no criminal proceedings were forthcoming. Taylor quite naturally lost her job, however she continued to press her concerns to anyone who would listen.

In 2000, Alison Taylor was not only morally vindicated; she was also recognized as the recipient of the Pride of Britain Awards in the category of Woman of Courage.

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“For years, children in care in North Wales were abused and beaten by those charged with their welfare. Some social workers turned a blind eye. Others were part of a more sinister conspiracy of silence. Thankfully, one woman was not prepared to look the other way – even though her complaints about the abuses she had witnessed cost her her job,” her biography on the Pride of Britain Awards site explains.

It may take some time, but if this whole affair is given the attention that it demands from the proper authorities, Ms. Higgins may just receive the recognition that she deserves. It doesn’t always work that way, though. Sometimes a measure of fleeting public recognition, and the ability to sleep at night with a clear conscience, is all the reward that you get for doing the right thing.

No admission of wrongdoing – let alone an apology – has been issued by Boston Children’s Hospital or DCF. Hence, there are no assurances that such a thing may never happen again. The same thing may very well be happening to another family at this very moment.

As for the results of the investigation said to be underway for Boston Children’s Hospital, it’s a game of wait and see. Why the FBI or the Justice Department isn’t investigating beats me.

As of today, Friday, A Miracle for Justina had acquired well over 43,000 likes, according to Facebook-provided statistics. That is a remarkable accomplishment, and it speaks volumes to the level of popular support the family gained since going public with their plight. Thank heavens there was someone willing to take their story to the public when they made that decision.

May the winds of good fortune sail the Pelletier family to the happy ending that they so handsomely deserve.