Dying patients denied experimental drugs - what can be done?

CNN     At first, Sandy Barker decided to behave nicely and sit silently in the audience as an official from the Food and Drug Administration extolled the virtues of a program to get experimental drugs to desperately ill patients.

Then she couldn't take it anymore. Barker's hand shot up.

"I've been sitting here for the past hour trying to be quiet, but I want to tell you what happened to my son," she said.

Barker looked down at a picture of Christian on her lap. She started to cry, but regained enough composure to describe how her son was diagnosed eight years ago with a rare form of leukemia when he was 13. A bone marrow transplant was supposed to help, but instead the donor's cells attacked Christian's body.

Christian's graft-versus-host disease was quickly getting worse. His life was on the line. Nothing was working. 

The Barkers searched for studies he could join but found none. Christian's doctors desperately wanted to try an experimental drug, but first the FDA had to give its blessing. 

The Barkers and their doctors begged the agency to allow Christian to use the medicine. By the time permission was given, more than three weeks had passed, and the graft-versus-host disease had moved to stage 4, the most severe stage. 

Christian died two months later.

During a panel discussion at a conference on rare diseases, Barker says the FDA official noted it can be helpful to lobby one's congressman to get access to experimental drugs.[...]

Last month the parents of a 7-year-old boy did just that and made headlines around the world. Josh Hardy's parents took to Twitter and Facebook when the drug company Chimerix denied their request for an experimental antiviral drug to save Josh's life. After receiving death threats from "Josh's army" -- executives had to hire security guards -- Chimerix reversed its position and granted Josh and other patients like him access to the drug.

Now that he's had the medicine, the virus that nearly killed Josh is gone and he's been moved out of the intensive care unit.[...]

Clergy Counselors and Confidentiality: A Case for Scrutiny: Rabbis Weinberger & Flaum

Jaapl    This is in regards to my recent post regarding Rabbi Biderman's breach of confidentiality by forwarding emails from Beth Alexander to her husband and a judge who is a friend of the husband. That raises the larger question of the parameters of rabbinic confidentiality. I am posting a link to legal discusion of a case in New York in which two rabbis tranmitted information that the wife revealed to them - to her then husband without informing her in advance or even warning her that they were obligated to reveal certain information to the husband. Was there in fact any halachic justification for Rabbi Biderman to reveal Beth's emails to her husband?

===========================================

As religious organizations contribute increasingly to community mental health, counseling by clergy acquires greater significance. As a result, clergy confront from time to time ethics challenges resulting from the need to balance a commitment to clients and an obligation to follow the requirements of religious doctrine. The recent New York case of Lightman v. Flaum highlights an example of this dilemma. A woman who asked two rabbis (Flaum and Weinberger) for help in her marriage complained that they had violated the confidentiality she expected of them. The rabbis requested summary judgment based on religious grounds, and the trial court rejected their request. The state’s highest court concurred with an appeal court’s reversal of the trial court. We discuss the arguments raised in this case about the extent to which clergy may owe a duty of confidentiality to those who consult them for psychological help, and we also consider the religion-based arguments that would fashion an exception to confidentiality in this unique context.

Schlesinger Twins: Beth describes the day Michael tried to commit her to a mental hospital

update - text format errors fixed.

In the following chilling yet fascinating account Beth Alexander describes her allegations of abuse by her husband - culminating in his calling the police to have her committed to a mental hospital.

Often when an intelligent, self-confident woman claims abuse by a husband who is perceived as a wonderful man - the question is if these allegations are true - why didn't she just walk out. Why would anyone tolerate this treatment. Unfortunately it is very common - and there are many factors.  In this case her version is supported by the police report.

As with many divorce accounts - it is important to realize this is her side of the story. If Dr. Schlesinger wishes to present his side - I will provide a forum for his version.

Beth's Diary the Day He Tried to Commit Me 

Rav Ahron Sorcher: Shabbos derasha this Shabbos - in Lakewood

Schlesinger Twins: Questioning the Willinger report that the judge used to take custody from Beth (part I)

There have been requests for the original documents dealing with this case. There are a lot of pages. Basically we have a court decision which based on  psychologists who had ties to the father which took custody away from Beth and gave it to Michael. Something rather unusual. Prior to that Beth had full custody because of Michael's attempt to have Beth committed to a mental hospital by falsely claiming he was a psychiatrist. However it was determined by the police psychiatrist that she was not mentally ill. An additional reason for Beth being given custody is because of her claims of physical and mental abuse

There was a psychiatric evaluation at the social agency Esra as the result of Beth being lured under false pretenses for a visit regarding child rearing - by someone she thought was her friend. In fact Dr. Schlesinger's supporters had convinced the friend that Beth was suffering from post partum depression and needed to be evaluated. That psychiatrist concluded that Beth was not mentally ill. There was another psychologist - who Dr. Schlesinger had surreptitiously visit the twins at a social agency.  She observed them for only a few minutes before she was discovered and kicked out. However she wrote a 5 page report not only on the twins but also on  Beth (based on what Michael told her). This "report" was submitted as evidence to the court also.

Basically I am going to start at the end, where recognized experts who examined Beth were asked to confirm or deny the reports from Dr. Schlesinger's experts that were the reason that the judge took full custody from Beth and gave it to Michael. I am simply going to give some excerpts from these reports. It should be clear that the judge's justification for giving custody to Michael is deeply flawed.

 =======================================

 Dr. Willinger [the author of the main report the judge replied upon ] concluded the children were 'retarded' because they did not speak 200 words at 2 years old. Yet she had only seen them when they were 14 months and 16 months old.

Dr. Willinger based her assessment of the developmental delay on the very general scales of child development.

“A healthy linguistic development can be seen if a child of approx. 18 months has an active vocabulary of 50 words, the “critical amount”, in order to achieve the so-called “vocabulary explosion” which leads a child to have 200 words by the time they are 24 months old, so that they learn about 9 new words a day. It is easy for parents to ascertain a linguistic delay.” Willinger Report

 This is totally debunked by the expert that Beth consulted - Dr Sinko Sanz - who stated:

“I believe however, that these scales do not take into account inter-individual development. This is not just my personal opinion, but the limitations of these development scales are recognised in professional circles. This is also the reason why I rarely apply them…”

Dr. Willinger´s claims were also contradicted by a scientific study that Beth's lawyer submitted, that concluded speech retardation could not be recognised under the age of 3.

Dr. Willinger criticised Beth for not questioning the opinions of her pediatrician, health visitor and child psychologist, who all told Beth that the children were healthy and well developed in her care. She said Beth should have looked on the Internet, seen the development scales, realised her children were not at the right stage and then questioned their professional expertise.

Dr Sinko-Sanz, from a human perspective, defended Beth's actions and said they were perfectly understandable.

“It is a situation where she (the mother) is under strain and where, as far as I know, was given different opinions by many different people. In such a situation you tend to accept the statements that are positive. I think that's understandable. Even more so where the people that said that everything was okay (with the children´s development) were medical professionals.” Court hearing 17 June 2011

Dr. Willinger fabricated test results for 180 questions that Beth had not even filled out! When Mag. Oberschlick produced the pages that Beth hadn't sent back to Willinger and asked her during the 10 hour hearing how she nevertheless had test results for these pages, Willinger denied that the test hadn't been filled out and said she had the completed tests in her office. Even though her original handwriting was on the pages in Beth's possession. She claimed:

“A test for both children was filled out. I have these tests among my documents. It is a mystery to me where these other filled in tests come from. I didn't give out a second document.”  Court hearing, 24.6.2011

Judge Göttlicher did not question this bizarre statement or investigate the matter further.

·

Both further psychiatric assessments by Dr Leixnering and Dr Wörgottor totally discredit the Willinger report

Willinger´s report was based on just 2 short assessments of the children.  By contrast, Dr Sinko-Sanz had assessed them over a 6-month period and said they were developing at their own pace.

Willinger´s assessment of  Beth as ´incoherent, illogical, delusional´ was later wholly refuted by 3 senior psychiatrists; Dr Marianne Springer Kremser, Dr Wörgetter and Dr Leixnering, who all confirmed Willinger had fabricated a diagnosis and there were no mental health problems whatsoever.

4.7.1     Dr. Willinger describes the father´s interaction with the children as follows:

The child raising ability of the children´s father can be shown by the given ratings. The children´s father is able to reflect in a variety of ways on the needs of his sons, by being able to recognize their emotional and physical needs.

P.49

In the interaction with his two sons, a loving, caring, intimate, very safe and routine behaviour can be observed.

        In contrast, Dr Löffler, who saw the children long after, on 21.7.2011, just 4 days before the father was awarded sole custody, described the relationship between the father and the children as follows:

Children´s father: no outreach (of children) to children´s father, no independent contact initiated, children´s father crosses boundaries in his behaviour, little reaction to the needs / signals of the child (turning away, ignoring). Danger Report, 21.7.2011, Dr Löffler

Judge Göttlicher herself initially accepted there were flaws in the Willinger report    

          

 In fact, Göttlicher herself initially raised doubts about the self same Willinger report.  Her sudden, drastic decision of 25.7.2011 was highly irregular and unusual considering that just 2 months previously, in May 2011 she denied the father's application for temporary custody on the grounds that the children were well cared for with their mother and she saw no danger: The judge noted:

“The mother takes good care of the children both in their daily care and upbringing and concerns herself with their welfare. This is well attested in the submitted reports in the file, including the reports of the Social Services (second district) and the statements from play groups. This point (the care of the mother for her children) is also not disputed by the father.” 

 Further, even Willinger attested to the loving parenting Beth showed the children:

"Even the report of the court expert, Dr Willinger states that the mother lovingly and caringly looks after the children and they are closely bonded to her.” Appeal Court decision, Denial Temporary Custody May 2011.

The fact that the Appeal Court acknowledged there was apparently nothing wrong with Beth but then said this didn´t affect parenting ability custody decision is simply outrageous.

“From the great wealth of evidence during the proceedings, it is apparent that the mother does not suffer from a psychiatric illness. However, child raising competence has no direct correlation to mental illness.” p.2 Appeal Court decision 2013

update Further refutation of Willinger

        Judge Göttlicher refers (original custody decision) to Beth's claims that Michael Schlesinger was also violent generally during throughout the marriage.  However she goes on to say that “the expert [Willinger] found nothing in the whole examination that indicated that the father might be aggressive, violent or not in control of his impulses. Oddly Judge Göttlicher did not send Dr. Willinger copies of the police documents attempt to have Beth committed nor his subsequent eviction order and restraining order and all mention of it is omitted from the Willinger report. 

          In the custody decision, Judge Göttlicher failed to mention Willinger’s hypothesis as stated by her in the 10 hour court hearing, that either the mother is not mentally ill and everything she alleged about the violence is correct, or she is mentally ill and is paranoid.  Beth's lawyer asked what we could deduce about the father if Beth were not mentally ill and Dr. Willinger stated this would be 'manipulation' by the father:

 “If we accept the opposing hypothesis, that the mother is not mentally ill, then the father's actions can be seen as manipulation.' Transcript, court hearing Willinger, 24.7.2011

As three further psychiatric reports (including a court commissioned one) all confirmed the mother is clearly not mentally ill, according to Willinger's reasoning, the father is manipulative.

The Story of the Jews by Simon Schama (PBS broadcast)

If the video is not accessible try this link
http://www.dailymotion.com/video/x166tz5_the-story-of-the-jews-in-the-beginning-ep1_creation

'Open Orthodox' or 'Neo Conservative'? by Rabbi Pruzansky

Arutz 7     "Open Orthodoxy", the Jewish movement which has been kicking up a storm in the US, has faced considerable opposition from the Modern Orthodox establishment there.

The term "Open Orthodoxy" was coined by Rabbi Avi Weiss, himself ordained as an Orthodox rabbi, who argues that "Orthodoxy" or Halakhic Judaism (i.e. faithful to Jewish law/Halakha) needed to be more "inclusive" and "flexible" to innovation than his contemporaries believed.

The movement has gained some traction in recent years, even as it is shunned by most other Orthodox rabbis, and has courted controversy by testing - and, as many respected rabbis insist, by outright crossing - the boundaries of Halakha.

Much of the criticism to the movement has come from the Rabbinical Council of America (RCA), the main body of American Modern Orthodox Rabbis and the largest rabbinic organization in the world.

One of Weiss's most vocal critics is Rabbi Steven Pruzansky, a former Vice-Chairman of the RCA and Arutz Sheva contributor. [...]

"One of their most prominent ordained rabbis has even argued that the Avot [Biblical Patriarchs] never really existed."

Positions such as these are what makes Open Orthodoxy "almost a replication of the road that the Conservative movement took over 100 years ago", Rabbi Pruzansky reiterates.[...]

But despite all that, clearly there are many Jewish people who see Open Orthodoxy as filling a need... that something that is missing in their Judaism. How do you respond to that?

For Rabbi Pruzansky, this question drills down to the fundamental error committed by movements such as Open Orthodoxy: an attempt to adapt and rewrite Torah values to suit every demand or ideal of the contemporary western world.

"You can't slake every thirst, that's the bottom line," he explains.

In particular, he says the domination of Open Orthodoxy and similar fringe movements by feminist activists is an indication that they are not drawing their fundamental values from the Torah, but looking outside of it.[...]

Miserliness and Speaking Badly about Others by Allan Katz

Allan Katz    James Ferrel from  The Arbinger institute ,in his highly recommended TedX Talk – Resolving the Heart of Conflict  –and  Article  explains why we value problems above solutions, conflict above peace, reconciliation and  cooperation, and how to remedy the situation.

In a nutshell – James Ferrel explains that when we objectify people, or we don't share our resources with them - for example by not opening up our homes or our hearts to them , we need to justify our actions and  view of these people as being undeserving.This triggers our looking for plenty of negativity about them and sharing it with others. This inner need for justification is so strong that it overrides the need for peace and better interpersonal relationships.

In the talk he claims that we actually value problems, mistreatment, trouble, and conflict. He explains that according to Martin Buber, we don't have problems with people whom we count or identify with. We see their humanity and that they  - 'are made in God's image'. The others who don't count in our eyes are viewed as objects. It is easier to view or treat people badly if you ' objectify ' them. But objectifying people comes with a consequence – a deep inner need to justify that view. So the heart sees advantage in trouble and conflict, it provides the proof and justification that we are looking for. People then begin to value problems above solutions, conflict above peace and cooperation.

The way out of this trap is to see the humanity of others -and that they are made in God's image. In an article – James Ferrel writes about company executives, employees and representatives of the unions who spent some time in a holiday resort trying to see how they could cooperate much more efficiently. At the end of the 3 days, they attempted to resolve disputes which had been around for more than a year and that were scheduled for arbitration. 'They resolved the disputes in forty minutes , because – during the first 2 days together they solved the heart of the conflict that had been dividing them, which was the mutual objectification and blame for each other. Until they saw their conflict partners as people, with hopes, dreams, cares and fears as real as their own, they needed justification more than they needed resolution and were both unwilling and unable to find creative, mutually beneficial possibilities. They found too much advantage in problems to be able to find lasting solutions.' – James Ferrel. [...]

Are People born Good: Dennis Prager

Schlesinger twins: Beth discusses the issue of psychological assessments typically required in custody cases

Rabbi Tzadok has raised some important questions regarding this custody case. I asked Beth Alexander to respond to his questions as well as to clarify and explain the facts. Her response should correct a number of misunderstandings that have been expressed by some of her supporters and opponents.

I still stand by my original proposal. If Dr. Schlesinger has a psychiatric evaluation by a neutral expert it would end the dispute. If he gets a clear bill of mental health then I think Beth should stop her campaign and accept the court ruling. On the other hand if the evaluation indicates significant problems then Beth should get full custody including the option of returning to England with her children.

Guest post by Beth Alexander Schlesinger

Any legal battle is difficult. Compounded with custody issues, the battle is all the more trying. Navigating your way through a custody battle in a foreign country, in a foreign language, grappling a legal system and its workings that are totally alien and baffling is like being lost in a maze blindfolded with your hands tied behind your back and your feet bound together. 

Not being a lawyer and without always having legal consultation to explain the nuances of the court decisions to me, I have had to try and make sense of a process that has so far not made any sense to a single lawyer or professional that has been involved in the case. The oft repeated terms, 'Kafkaesque, and 'the Wild West' are perhaps the closest way of describing the bizarre chain of events stretching back to 2010. 

Through my own experiences and conversations with countless other parents going though their own hellish custody battles here in Austria, I have gained a crash course in the standard procedures that judges should follow and know that my case has been highly irregular by any stretch of the imagination. 

Custody decisions are almost always based on a court commissioned psychological assessments on all parties involved: father, mother and child/ children. As was to be expected, the judge commissioned such an assessment back in 2010 after we first separated. 

This was carried out by Dr Ulrike Willinger in 2010, a psychologist I later discovered has a direct connection to Dr Schlesinger. Not only did Dr Schlesinger work in the same hospital as her, but it later emerged that she is a close colleague of Dr Thau, the husband of Konstanze Thau, the High Court judge who intervened in the case on Dr Schlesinger's behalf without having any legal standing on the case.

By the time I found that out, it was too late. Willinger had already fabricated a diagnosis on me, falsely labelled the children as 'retarded' for 'not speaking 200 words when the children when 2 years old' and recommended the father for full custody.  Even though the children were only 14 months and 16 months when she saw them and even though the High Court denied Dr Schlesinger unsupervised access.The judge accepted the highly dubious report in its entirety and awarded the father sole custody in July 2011.  

I appealed. The Appeal Court reduced the father's custody to interim custody and sent the case back to the Lower Court for 'further investigation.' They stated that the father would have to prove:

1) his cooperation over an extended period of time (he promised to allow me generous contact to the children whenever I wanted, including long holidays to England with the children should he be awarded custody)

2) that he really is the better parent to manage the daily needs of the children

The reality is:

1) The very first thing the father did after being awarded custody was to break off all contact between me and the children. It was 8 weeks before I saw them again. Since then he has repeatedly cancelled my visits on short notice and without valid reasons.

2) He immediately hired Filipinos to look after the children almost full time while he works. He still has the Filipinos to this day. 

 

For the past 2 years I have repeatedly applied to the court for the judge to commission another psychological assessment on both the children and the father. 

I have presented extremely worrying evidence both about the father's violence and erratic/ irregular behaviour that clearly points to some kind of personality disorder. I have also expressed strong concerns about the children's physical and psychological health, including concerns about their missing teeth which the father has, to date, failed to account for. 

However, instead of commissioning a new assessment on all involved parties as is standard legal procedure in a custody trial, the judge relied on the same fabricated and outdated report by Willinger to award the father full and final custody 2 years later, in 2013. She only commissioned an assessment on me which proved I was 100% healthy. 

The Willinger report has now been discredited by 3 experts, making her initial custody recommendation and the decision that was based on it, completely worthless. 

Although strictly speaking a psychiatric assessment on the father was never specifically instructed by the Appeal and Supreme Court, it is incomprehensible why the father has not not been psychologically assessed since the judge commissioned an assessment on me!

It is a basic legal requirement to assess the parent who is to be awarded full custody by an independent expert, especially in light of the evidence we presented about him. 

Yet, the judge claimed she had enough evidence without commissioning a psychiatric assessment on him. 

Not only does this illustrate the clear one-sidedness of the process but also represents gross negligence by the judge to disregard his attempt to commit me to a mental hospital on a fabricated diagnosis and his lies to the police that he was a psychiatrist when he was a trainee doctor with no experience in psychiatry whatsoever.  

None of the testimony of his violence and erratic/ irrational behaviour reported by myself and other witnesses has ever been investigated by the courts. 

Dr Schlesinger has vehemently refused every suggestion of an independent psychological assessment on both the children and himself. I had no problem being investigated since I was confident of the results which proved beyond any doubt that there is no mental illness and neither has there ever been. I have never in my life taken medication other than paracetamol for an occasional headache which my medical records can also prove. 

If Dr Schlesinger genuinely has nothing to hide, why is he so afraid of being assessed or having the children assessed? What does he fear an independent expert may uncover?

Schlesinger Twins: Sarah's guest post regarding Rabbi Biderman

Sarah promised to discuss the Schlesinger Twins case with Rabbi Biderman if I posted his written testimony to the  court from 2012. I have fulfilled that condition  and I am looking forward to her guest post describing that discussion. I would also accept a guest post from Rabbi Biderman himself or from Dr. Schlesinger or one of his supporters.

 Allan Katz  has raised the central issue

R-Biederman, even if the kids were doing well with the father is it not important for the kids to have a relationship with a mother beyond the once a week visits, which have on several times being cancelled- especially at this tender age. Why does the father not remarry - being looked after by 2 fillipinos is not a home for them. Where is the ahavas yisroel for Beth - Is it because she is an outsider , there are no feelings for the plight of the mother. We are taught not to learn from the midos of the people of Canaan - apply this to Austria and Germany. The father is waging a war against his wife on the backs of his kids- he wants custody not because he can provide a better home and family life - 2 fillipinos - but to make Beth's life as miseable as possible. 

There are a number of issues that need clarification (besides those listed below).

1. Was his testimony based on his own observations or was he relying primarily on information from Dr. Michael Schlesinger

2. Does he view himself impartial or is he openly taking Dr. Schlesinger's side against Beth.

3. How does he think the twins are doing now relative to their peers - in language, psychological, social and developmental issues? It is two years since his written testimony have they significantly changed?.

4. Are the twins receiving therapy for their obvious language problems?

5. Is he against Beth regaining custody and why?

==============================

Not brainwahedMarch 27, 2014 at 12:25 PM

Anyone who is brainwashed or corrupt (or both) will always deny it when confronted, just like Sarah has done. She also refuses to comment on the following:

1) Rabbi Biderman has made voluntary statements to the court (most notably in May 2012) under his own name (not from the kindergarten office), in support of the father. Why would he do this? He clearly HAS involved himself so it is impossible for him now to claim he is impartial.

2) If Rabbi Biderman’s position is justifiable, why are you defending him under anonymous comments on a blog? Why doesn’t he speak for himself and write a statement explaining his position as a guest blog post. This case has reached a large enough audience around the world with enough people posing genuine questions, for ‘Rabbi’ Biderman to be a man and answer some of them. His silence raises even more questions than the one’s posed to him here.

Until these points are addressed, we all are entirely justifiable in being angry at Rabbi Biderman and his Chabad colleagues for being silent in the face of such an injustice.

Delete

sarahMarch 27, 2014 at 1:07 PM

when you show me said letters, I will personally call him and ask him!

hows that?

Transformative Mediation: Professor Baruch Busch describes his theory and practice

Schlesinger Twins: Rabbi Biderman's testimony regarding the twins

I, Rabbi Jacob Biderman, born on 28.11.1957 declare the following in testimony to the court:

Due to requests for the voluntary testimony that Rabbi Biderman - the head of the kindergarten that the twins attend - gave to the court, I am posting this translation from the German

---------------- Dated 15.5.2012

In the last few days I was contacted by a Rabbinic colleague in England who informed me that an acquaintance of Beth Schlesinger has initiated a media campaign which is about to be publicised. The media campaign claims that this is a 'horror story,' that the twins Samuel and Benjamin Schlesinger are in a very bad state with their father and that their father is endangering them. They further claim that this is demonstrated by the fact that Samuel needed a number of teeth removed. I refuted these claims and told this Rabbi that the director of the Lauder Chabad Kindergarten, which is under my authority, has told me not only about how well the children have settled into kindergarten since Autumn but also how much they have developed psychologically. I also told my English colleague that these false and one-sided claims illustrate amateur journalism and above all, harm the children Furthermore, I am being harassed by different Rabbonim from England, Israel and Australia who have contacted me to ask me to help the mother because - according to her - the children are in a terrible state.

Rabbi Jacob Biderman ----------------

Schlesinger Twins: Rebbitzen Rosenberg comes to Vienna community to help Beth and her children

Guest post by Rebbetzin Miriam Rosenberg. 

The Rebbetzin is the wife of Rav Sariel Rosenberg from Bnei Brak -  a major talmid chachom and posek who is a member of the beis din of Rav Karelitz. She is very actively involved in helping woman who have lost the custody of their children. She has visited Vienna a number of times and spent much time investigating Beth's case and she was appalled at the lack of support for  Beth as well as how the twins have suffered. I asked her to write a guest post of what she has found.

Below is her 5 page letter translated in full from the Hebrew followed by the Hebrew original she sent me for posting here. In the first part she describes the tragic story of Yael which led her to Vienna to raise money for lawyers and where she found out about Beth. She describes in great detail the great miscarriage of justice and the reasons the community - which is known for it kindness and generosity - has failed to intervene.

============================

   Rebbitzen Rosenberg's Letter for Beth

  חוות דעת משפחת שלזינגר, וינה by Rebbetzin Miriam Rosenberg