text:
Jabbaz v. Mouammar, [2003] O.J. No. 1616
DATE: 20030505 DOCKET: C39505
ROSENBERG, MACPHERSON and SIMMONS JJ.A.
B E T W E E N: )
GUSTAVO RAYO JABBAZ )
Linda J. Meldrum for the appellant
Plaintiff )
Respondent )
– and – ) Bryan R. G. Smith
) for the respondent
SUHEILA ROLIM MOUAMMAR )
Defendant Appellant
) Heard: April 8, 2003
On appeal from the Order of Justice Wailan Low of the Superior Court of Justice dated January 16, 2003, reported at [2003] O.J. No. 198.
ROSENBERG J.A.:
[1] This appeal from the Order of Low J. concerns the application of the Hague Convention on the Civil Aspects of International Child Abduction, Can.T.S. 1983, No. 35, and in particular whether the uncertain immigration status of the custodial parent and the child in the child's country of habitual residence is grounds to refuse to apply the Convention. The motion judge found that the immigration status was a basis for refusing to order the return of the six-year old child to his mother in the United States. In my view, in the circumstances of this case, there were no grounds to refuse to apply the Convention. Accordingly, I would allow the appeal and order that the child be returned to his mother.
[2] At the opening of the appeal, the appellant applied to file fresh evidence, which I will outline later in these reasons. I would not admit the fresh evidence.
[3] The appellant, Suheila Mouammar, lived with the respondent, Gustavo Jabbaz, in Toronto, for three years from 1995 to October 1998. They have one son, Mateos, who is six years of age. In these reasons, I will refer to the appellant and respondent as the mother and father respectively. The parents and Mateos are Canadian citizens.
[4] The couple separated in October 1998 and in February 1999 they signed a separation agreement. Both parties were represented by counsel. Under the agreement, the couple shares joint custody of Mateos, but his primary residence is with the mother. The father agreed that the mother could relocate with Mateos outside of Ontario and the agreement expressly acknowledged that the mother intended to relocate with the child to Los Angeles. At the time the agreement was being negotiated, the mother had begun a relationship with Robert de Vico, a permanent resident of the United States. Mr. de Vico sometimes worked for long periods outside of California and so the agreement also provides that the mother may change Mateos' residence to a place other than California by giving the father written notice. The agreement gives the mother ultimate decision- making authority if she and Mateos reside outside Ontario. The father is to have "such generous access as is reasonable in the circumstances if the child is residing outside of Ontario".
[5] The mother and Mateos did in fact relocate to Los Angeles. She anticipated that she would marry Mr. de Vico and that she and Mateos would acquire permanent residence through her partner. Mateos lived with his mother for 3½ years in Los Angeles. The mother and Mr. de Vico had a child, Luca. They did not marry as expected, and the relationship ended acrimoniously in the summer of 2002, while Mateos was on an access visit with his father in Toronto. The mother was required to leave the home and she stayed temporarily with friends. Litigation in California ensued over custody and support for Luca.
[6] Because of the mother's unsettled state in the summer of 2002, the parties agreed that the father would prolong his summer access. Later, at the end of July, when the father was to return Mateos to the mother, she agreed that it would be better for Mateos to stay with the father for a further time. In late August 2002, the mother came to Toronto and had discussions with the father about who should take care of Mateos. There was conflicting evidence before the motion judge on the outcome of these discussions. She found that the parties agreed that Mateos would only live temporarily with the father until the mother re-established herself. In the meantime, with the mother's consent, the father enrolled Mateos in a Toronto school.
[7] In October 2002, the mother and a friend moved into the large home of a mutual friend, Andrew Beath, a retired businessman. Mr. Beath is Canadian but is a permanent resident of the United States. Mr. Beath figures in the fresh evidence dealt with below. The mother then told the father that her situation had stabilized and she wished to have Mateos returned to her. The father refused.
[8] On December 10, 2002, a California court ordered that Luca spend equal time with the mother and Mr. de Vico. Mr. de Vico also pays the mother child support for Luca. A court-appointed social worker inspected the mother's living arrangements and had no concerns. An assessor will make recommendations to the California court as to the most appropriate long-term arrangement for Luca. The mother expected that report would be available in April 2003.
The mother's immigration status
[9] As indicated, the mother is a Canadian citizen. She has worked in California as a part-time translator and consultant for Dream Works SKG and worked for the World Music Festival in Los Angeles. She also performs as a sacred dancer at weddings and other functions. Her contract with Dream Works has now been renewed for a third year. Her immigration status in the United States is, at best, uncertain. The motion judge described the mother and Mateos as being "illegal aliens". The mother does not have a "green card". When she moved to the United States, she expected that she and Mr. de Vico would marry and this would lead to the regularizing of her immigration status.
[10] In an affidavit filed before the motion judge, the mother describes her status and that of Mateos as follows:
64. Because I am a Canadian citizen, I may remain in the United States as a visitor for six months from the most recent day on which I entered the country. I can renew my visitors status at any time by leaving the United States and re- entering. This is what many Canadians do who live in the United States for extended periods, but who do not have permanent residence.
65. Accordingly, if Mateos returns to California with me, he will have the same visitors status there as I do. This is the same status under which he has lived in California up to now and, contrary to what Gustavo says, it has never before been of concern to him. It should certainly not be accepted now as a reason for Mateos to remain in Toronto.
[11] On the motion, the mother, without objection, filed a letter from Glenn Kawahara, a Californian attorney specializing in United States Immigration and Naturalization law. In the letter he states that a Canadian citizen can enter the United States, without a visa, for temporary purposes for a period of six months. If the temporary purpose is not accomplished within the six months, it is possible to obtain extensions of stay in increments of six months. A legitimate, temporary purpose would be to participate in court proceedings in the United States. It will be recalled that the mother is in litigation with Mr. de Vico over the custody and support of Luca.
[12] Apparently without objection, the father was permitted to file a printout from a United States Immigration Services web-site. The motion judge interpreted the information on the web-site as providing that Canadians can only gain lawful entry as visitors:
(a) If the purpose of their trip to the United States is for business, pleasure or medical treatment,
(b) If they plan to stay for a specific limited period, and
(c) They have a residence outside the United States as well as other binding ties that will ensure their departure from the United States at the end of the visit.
The father's difficulties in travelling with Mateos
[13] In his affidavit, the father set out the difficulties he has had in travelling with Mateos in the United States. He attributes these difficulties to the uncertain/illegal immigration status of the mother and Mateos. While the mother disputed some of these claims, the motion judge accepted the father's evidence that he has had difficulties in getting the child back into the United States following an access visit in Canada. The motion judge also accepted that in 2000, the mother insisted that the father exercise his summer access in California because there was a real possibility that the child would not be permitted to re-enter the United States after leaving. In direct communication and through his lawyer, the father has urged the mother to regularize her immigration status.
The litigation
[14] On December 2, 2002, the father moved, without notice, in the Ontario courts for an order for interim custody of Mateos. Ferrier J. ordered that on an interim interim basis Mateos reside with the father and that the mother not remove Mateos more than 25 kilometres from the City of Toronto.
[15] The father's motion for interim custody was made returnable on December 19, 2002. At the same time the mother brought a cross-motion under the Hague Convention. In accordance with Article 16 of the Convention the motion judge determined the mother's cross-motion first.
THE LEGISLATION
[16] Section 46 of the Children's Law Reform Act, R.S.O. 1990, c. C.12, incorporates the provisions of the Hague Convention into Ontario law. This appeal principally concerns Article 13 of the Convention, which sets out the limited circumstances in which the court is not required to return a child to his or her country of habitual residence. Article 13 and the other relevant parts of the Convention are the following:
The objects of the present Convention are:
(a) to secure the prompt return of children wrongfully removed to or retained in any Contracting State; and
(b) to ensure that rights of custody and of access under the law of one Contracting State are effectively respected in the other Contracting States.
The removal or the retention of a child is to be considered wrongful where:
(a) it is in breach of rights of custody attributed to a person, an institution or any other body, either jointly or alone, under the law of the State in which the child was habitually resident immediately before the removal or retention; and
(b) at the time of removal or retention those rights were actually exercised, either jointly or alone, or would have been so exercised but for the removal or retention.
The rights of custody mentioned in sub-paragraph (a) above, may arise in particular by operation of law or by reason of a judicial or administrative decision, or by reason of an agreement having legal effect under the law of that State.
The Convention shall apply to any child who was habitually resident in a Contracting State immediately before any breach of custody or access rights. The Convention shall cease to apply when the child attains the age of 16 years.
Where a child has been wrongfully removed or retained in terms of Article 3 and, at the date of commencement of the proceedings before the judicial or administrative authority of the Contracting State where the child is, a period of less than one year has elapsed from the date of the wrongful removal or retention, the authority concerned shall order the return of the child forthwith.
Despite the provisions of the preceding Article, the judicial or administrative authority of the requested State is not bound to order the return of the child if the person, institution or other body which opposes its return establishes that:
(a) the person, institution or other body having the care of the person of the child was not actually exercising the custody rights at the time of removal or retention, or had consented to or subsequently acquiesced in the removal or retention; or
(b) there is a grave risk that his or her return would expose the child to physical or psychological harm or otherwise place the child in an intolerable situation.
In considering the circumstances referred to in this Article, the judicial and administrative authorities shall take into account the information relating to the social background of the child provided by the Central Authority or other competent authority of the child's habitual residence [emphasis added].
THE REASONS OF THE MOTION JUDGE
[17] The motion judge held that there were two issues to be decided on the mother's cross-motion: first, whether the mother acquiesced in the retention of the child in Ontario and second, whether the child would be in an intolerable situation if returned to California. It is implicit in her reasons that the motion judge found that Mateos was habitually resident in California within the meaning of Article 4 and had been wrongfully retained within the meaning of Article 3. The motion judge found that the mother did not acquiesce in the retention of the child in Ontario within the meaning of Article 13(a) of the Convention. The father does not contest that finding on this appeal.
[18] The motion judge concluded that an order should not be made returning the child to the United States. She found that this would put the child in an intolerable position within the meaning of Article 13(b) of the Convention, and that such an order would be contrary to public policy. The important parts of her reasons are the following:
In the absence of the child's immigration status being regularized such that he may lawfully enter the United States as a person intending to reside there, he could only lawfully enter as a visitor. At present, a representation to the U.S. government that the child enters the United States as a visitor would be untrue. If he were to enter into the United States on that misrepresentation, the entry would be unlawful. The child would be an illegal alien. If a true declaration were made at frontier that the intention was that the child would reside in the United States, he would not at present qualify as a visitor and would not be permitted entry. Therefore a court order requiring the return of the child to the United States would be incapable of being effected in a lawful manner.
I am of the view that the making of an order requiring the return of the child to the United States would, in the circumstances before me, be both contrary to public policy and would put the child into an intolerable position.
Accordingly, an order will not be made at this time.
THE FRESH EVIDENCE
[19] At the opening of the appeal, the mother applied to have the court admit fresh evidence. The evidence consists of an affidavit of Mr. Beath, the man with whom the mother has been living since her break-up with Mr. de Vico, and an affidavit of a California attorney. Mr. Beath states that on April 3, 2003 (a week before the hearing of the appeal) he married the mother. He also states that he is a permanent resident of the United States and is eligible to become a United States citizen. He has begun that process and believes that he will become a citizen by August 2003. Once he becomes a United States citizen, the mother may apply to become a permanent resident.
[20] The California attorney, Mr. Kawahara, confirms Mr. Beath's eligibility for U.S. citizenship and that once he becomes a citizen he will be able to petition for his now wife to become a lawful permanent resident of the U.S. At the same time he will be able to petition for Mateos as his stepson. That process should take a further seven months.
Mr. Beath could also petition for his wife to become a permanent resident while he is a permanent resident but the waiting period would be considerably longer, perhaps five years. The affidavit concludes with a statement that while the permanent residence applications are being processed, "with proper admission documents issued by the BCIS [Bureau of Citizenship and Immigration Services]" it will be possible for the mother and her son to travel between the United States and Canada. The affidavit is silent about what that documentation might be or whether the mother and child could legally remain in the United States for an extended period.
[21] The father opposes the admission of the fresh evidence.
Intolerable situation
[22] Since his birth, except for the access visits by the father following the separation, Mateos has lived with his mother. There is absolutely no evidence that this situation has been harmful to the child or that the mother's living situation would in any way affect the child's physical or psychological well-being. The fact that a California court has ordered that the mother's other child live with her half of the time is a compelling indication that the child would not be in any danger. The only issue then is whether the mother's uncertain, even precarious, immigration status in the United States was justification for the refusal of the motion judge to enforce the Hague Convention. For convenience, I repeat the relevant parts of Article 13.
(b) there is a grave risk that his or her return would expose the child to physical or psychological harm or otherwise place the child in an intolerable situation [emphasis added].
[23] The circumstances in which a court may refuse to order the return of a child under Article 13 are exceptional. The risk of physical or psychological harm or, as alleged in this case, an intolerable situation must be, as set out in Article 13, "grave". The use of the term "intolerable" speaks to an extreme situation, a situation that is unbearable; a situation too severe to be endured.
[24] Unlike virtually all other child welfare statutes, the test under the Hague Convention and Article 13 in particular is not framed in terms of the best interests of the child. The court to which the application is made under the Hague Convention is not concerned with determining which parent should have custody of the child using the best interests of the child test. Canada as a signatory to the Convention and Ontario having implemented the Convention into domestic legislation have made the policy choice that the best interest determination is to be made in the courts of the child's habitual residence. In this case, at this time, that is California. See Thomson v. Thomson (1994), 6 R.F.L. (4th) 290 (S.C.C.) at paras. 42-45; Pollastro v. Pollastro (1999), 43 O.R. (3d) 485 (C.A.) at paras. 18-28; Finizio v. Scoppio-Finizio (1999), 46 O.R. (3d) 226 (C.A.) at paras. 27-29; and J.E.A. v. C.L.M. (2002) 220 D.L.R. (4th) 577 (N.S.C.A.) at paras. 23-30. As Cromwell J.A. said at para. 30 of the J.E.A. case:
It follows that the Court which is asked to order return is not to address the child's best interests in anything other than limited and exceptional respects. Instead, the Court's primary obligation is to ensure the return of the child to the place where those best interests ought to be determined: see Thomson at para. 42. Consistent with this purpose, a judge considering an application for return under the Convention is not to approach the task as he or she would an application for interim or permanent custody. That would involve determining what is in the best interests of the child, something which is to be determined by the courts in the place of habitual residence.
[25] The uncertain immigration status of the mother and the child in the United States do not create a grave risk that return of the child to the custody of his mother in the United States, in accordance with the separation agreement, would place the child in an intolerable situation. The bare fact itself of living without regularized immigration status does not approach the very high threshold required to fall under Article 13(b). In this case, the evidence shows that while living in California, the child's development was "very normal". There is no reason to suspect that this would not continue to be the case upon the child's return to California.
[26] In stating this, I do not suggest that uncertain immigration status can never be a concern under Article 13. For example, if because of their immigration status, the mother and child were deportable to another country in which the child would face a grave risk of harm, then the Article 13 exception might be made out. Thus, if upon their return to the United States, there was a grave risk that the mother and child would be deported to some country in the midst of serious sustained armed conflict, this might well be an intolerable situation. But, that is hardly the case here. At worst, this mother and child, who are both Canadian citizens, would be deported back to Canada. Obviously, deportation is not a desirable situation but I cannot see how deportation to Canada could create an intolerable situation for the child.
[27] It may well be that the father now regrets having made the agreement he did with the mother when the couple separated. However, his remedy is not the self-help remedy of retaining the child in breach of the agreement and the Hague Convention, but in applying to the California courts for variation of the custody and access terms, if so advised. Counsel for the father conceded that if Mateos were returned to California, its courts would have jurisdiction over the child and could entertain such an application, as would an Ontario court in comparable circumstances under s. 22 of the Children's Law Reform Act. As Jennings J. said in Medhurst v. Markle (1995), 26 O.R. (3d) 178 (Gen. Div.) at 182, "It is to be presumed that the courts of another contracting state are equipped to make, and will make, suitable arrangements for the child's welfare."
[28] There is absolutely no evidence that the California courts would be unable to act to ensure the child's best interests. Any concerns about the effects the child's uncertain immigration status might have on the child's welfare can be fully aired before the California courts. It also seems to me that California courts would be in a far better position to determine the relevancy of that status. I think it highly undesirable that a Canadian court should be asked to make such an assessment, much less to do so on the very scant "evidence" proffered in this case in the form of a printout from the United States Immigration Service web-site.
[29] The father fairly makes the point that the mother has had over three years to clarify and legalize her immigration status in the United States. I agree that it is unfortunate that the mother has not acted more expeditiously and perhaps in a more straightforward fashion. However, it must be remembered that she was expecting to marry Mr. de Vico and that this would apparently have provided a simple route to permanent residency status in the United States. The relationship collapsed in 2002 and the mother then found herself embroiled in custody and support litigation with Mr. de Vico. The uncertain immigration situation that resulted does not, however, indicate that Mateos would be placed in an intolerable situation. For example, there is no evidence that Mateos would be denied schooling or health care while in California. He attended pre-school while in California. He apparently has a suitable residence with the mother who has raised him since birth. Finally, although the father has had some difficulties in the past in travelling with Mateos while exercising his access rights, the evidence shows that in the end he has always been able to take Mateos back and forth across the Canada/U.S. border. Any concerns over access should in any event be raised in California courts.
[30] In her reasons, the trial judge relied upon Chan v. Chow (2001), 199 D.L.R. (4th) 478 (B.C.C.A.), describing that case as raising a similar issue. The facts of Chan are complex. Suffice it to say that the father, who had wrongfully removed the daughter from Hong Kong, proved that within a few months of the motion the mother and child would be forced to leave Hong Kong. Proudfoot J.A. said the following at para. 62:
An underlying purpose of the Convention is the achievement of continuity in the residences of children. If Emily is returned to Hong Kong, she will be forced to move once more in the next few months, an intolerable situation for her in my mind [emphasis added].
[31] Proudfoot J.A. went on to catalogue a number of other reasons for finding that the intolerable situation exception had been met. She found at para. 63 that a "second and equally important reason is that [the mother] has had a very unstable living pattern" including abducting the child herself at one point. As well, on a prior occasion the mother had left the child with a relative in Mainland China without the father's knowledge. There was also "the added concern and grave risk that Emily will be 'hidden' from [the father] once more" (para. 65).
[32] In my view, Chan does not stand for the proposition that in every case, movement of a child to another country within a few months of the child's return in accordance with the Convention constitutes an intolerable situation. That would set the intolerable situation test too low. Families, including children, often have to move from town to town and even from country to country. Such moves can be disruptive because they can interfere with schooling and making friends. However, I would not describe every such situation as intolerable.
[33] In F. (R.) v. G. (M.), [2002] J.Q. No. 3568 (Que. C.A.) at para 30, Chamberland J.A. said, "The Hague Convention is a very efficient tool conceived by the international community to dissuade parents from illegally removing their children from one country to another. However, it is also, in my view, a fragile tool and any interpretation short of a rigorous one of the few exceptions inserted in the Convention would rapidly compromise its efficacy." I agree with that observation. Refusing to enforce the Convention because the child might have to move a short time later is not consistent with the rigorous interpretation required and is inconsistent with the stated objects of the Convention to secure the prompt return of children wrongfully removed or retained from the Contracting State and to ensure that custody rights are respected. Such an interpretation is, in my view, inconsistent with the thrust of the cases in this province such as this court's decisions in Pollastro and Finizio. Continuity in residence is desirable but some instability is not intolerable.
[34] That said, it seems to me that the result in Chan may also be explained by the several other concerns noted by the Court of Appeal including the grave risk that the mother would once again hide the child from the father, possibly in Mainland China.
[35] Finally, unlike in Chan, the evidence in this case does not show that the child would be forced to move once more in the next few months. However uncertain the mother and child's immigration status in the U.S., they have been able to live there for three and a half years and the mother has been able to access the California courts to obtain custody and support for the other child.
[36] The motion judge's decision is "entitled to deference and should not be set aside unless she applied the wrong legal principles or made unreasonable findings of fact": Katsigiannis v. Kottick-Katsigiannis (2001), 55 O.R. (3d) 456 (C.A.) at para. 31. In my view, the motion judge did apply wrong legal principles and in finding that the child would be placed in an intolerable situation she drew unreasonable inferences from the facts.
[37] As I read her reasons, the motion judge gave as an independent reason, apart from intolerable situation, that enforcing the Convention in this case would be contrary to public policy. She was concerned that the mother would lie about her intentions to gain entry to the United States with the child. At different points in her reasons, the motion judge referred to the mother and child as being illegal aliens and that if they entered the United States as visitors "such representation is not truthful and both the mother and child enter the United States fraudulently". As she put it, "Therefore a court order requiring the return of the child to the United States would be incapable of being effected in a lawful manner."
[38] I do not agree with the motion judge's characterization of the public policy issue. First, a Canadian court is in no position to determine whether or not the mother and child are illegal aliens or whether any representations they would make at the border would be fraudulent. That is a matter for the United States authorities and, possibly, the California courts.
[39] Second, the motion judge's reasons give no weight to the competing policy consideration as represented by Ontario's incorporation of the Hague Convention into its domestic law. I repeat the observations of Chamberland J.A. in F. (R.) v. G. (M.) at para. 30 that the Hague Convention is "a fragile tool and any interpretation short of a rigorous one of the few exceptions inserted in the Convention would rapidly compromise its efficacy." That means that courts should be very wary of grafting new public policy exceptions on to the Convention in the face of the very clear public policy represented in the Convention itself.
[40] Third, the motion judge's conclusion gives no weight to the father's own position. He has retained the child in breach of the separation agreement that he entered into with the mother. Given that the test for Article 13(b) is not met, he is thus in contravention of s. 46 of the CLRA and of the Hague Convention, wrongfully retaining a child in Canada.
[41] Finally, I am concerned about using a parent's uncertain or precarious immigration status, short of an intolerable situation, as a basis for refusing to enforce the Hague Convention. This gives to one parent a potentially potent weapon to use against the other parent in custody disputes. Parents with uncertain immigration status are already in a vulnerable position and I would regret sending a message that would further marginalize them and deny them access to the protections intended by the Convention.
[42] In her reasons, the motion judge relied upon the decision of the Newfoundland Court of Appeal in Bursey v. Bursey (1999), 47 R.F.L. (4th) 1. In that case, the court refused to enforce an indemnity clause in a domestic contract because the purpose of the clause was to discourage the wife from reporting her husband's failure to pay tax to the relevant authorities. The court held at para. 25 that "it is well settled that a contractual provision whose ultimate design is to perpetrate a fraud on a public taxing authority is contrary to public policy and unenforceable". In my view, that principle and the more general principle that courts will not lend their assistance to a party seeking to enforce rights by relying on an illegal agreement are of limited application to Hague Convention proceedings. I have already indicated my view that this province's public policy is reflected in the incorporation of the Convention into the CLRA. Moreover, the motion judge was not being asked to enforce a separation agreement tainted by illegality.
[43] Finally, I do not see why this court should prejudge how the United States immigration authorities will deal with the question of the legality of the child's entry. In that respect, I note that it is not at all a foregone conclusion that Mateos would be refused entry even if he were judged an "illegal alien". For example, see Roszkowski v. Roszkowska, 644 A. 2d 1150 (Ch. Div. 1993) at para. 21, where the court held that since under United States law treaties are "the supreme law of the land", the Hague Convention "should take precedence over any conflicting immigration law".
[44] I have not found it necessary to rely upon the fresh evidence in finding that the motion judge erred in holding that returning Mateos to the United States would place him in an intolerable situation and be contrary to public policy. I would therefore not admit the fresh evidence.
[45] The question of the appropriate order to make in this case is not a simple one. While, as I have said, the question of entry into the United States is for the U. S. officials, equally, Ontario courts have no right to pre-empt that decision by simply ordering that the child be returned to the United States. Accordingly, I would make the order that the child be returned to the United States, contingent on the child being permitted entry into the United States. At the hearing of the appeal, counsel for the mother agreed that this was an appropriate condition.
[46] I have considered whether the contingency should be that the child be "lawfully" permitted entry, or that the mother must "truthfully" represent her status and that of her child. Because of the heavy weight I place on the public policy as reflected in the Hague Convention, I do not think such terms are appropriate or even enforceable.
[47] Accordingly, I would allow the appeal, set aside the Orders of Low J. and Ferrier J., and order that, pursuant to the Hague Convention, Mateos Andres Jabbaz Mouammar, born April 22, 1997, be returned forthwith to his mother, Suheila Rolim
Mouammar, in Los Angeles, provided that Mateos is permitted to enter the United States by United States authorities.
[48] If the mother is seeking costs of the motion before Low J. and of the appeal she may serve and file brief written submissions together with a bill of costs within ten days of receipt of these reasons. The father shall serve and file his submissions with respect to costs within ten days of receipt of the submissions of the mother.
Signed: "M. Rosenberg J.A."
"I agree J.C. MacPherson J.A." "I agree Janet Simmons J.A."


text:
More than 1,000 dead in DR Congo Ebola epidemic
Saturday May 4 2019
Health workers in DR Congo move a patient to a hospital after he was cleared of Ebola on November 4, 2018. PHOTO | AFP
The central African country declared a 10th outbreak of Ebola in 40 years last August centred in the city of Beni in North Kivu province before the virus spread into the neighbouring Ituri region.
The World Health Organisation had initially voiced hope it would be able to contain the outbreak, thanks in part to a new vaccine.
More than 1,000 people have now died of Ebola in the Democratic Republic of Congo, authorities said, as aid workers warned that the highly contagious virus combined with insecurity in the restive region was creating a "deeply worrying situation".
The current outbreak is the second deadliest on record, after an epidemic killed more than 11,300 people in West Africa in 2014-2016.
Efforts to roll back the outbreak of the haemorrhagic fever have been hampered by fighting but also by resistance within communities to preventative measures, care facilities and safe burials.
"In total, there have been 1,008 deaths (942 confirmed and 66 probable)," the health ministry said in a daily update late Friday.
WHO preparing for the worst in DRC Ebola outbreak
Ebola worker killed at DRC hospital
Ebola cases exceed 1,000 in DRC
EDITORIAL: Address Ebola in DRC now
But in recent weeks senior WHO officials have conceded that insecurity, scarce financial resources and local politicians turning people against health workers had seriously undermined the containment effort.
"We are dealing with a difficult and volatile situation," Michael Ryan, the executive director of WHO's Health Emergencies Programme, told reporters in Geneva on Friday.
"We are anticipating a scenario of continued, intense transmission," he added.
The long-standing presence of various rebel groups in Ituri and North Kivu has made it difficult for health workers to access those who might have come into contact with Ebola, a figure that currently stands at 12,000 people.
But beyond the militias, communities in the aftermath of DRC's December elections "are being manipulated" against cooperating with Ebola responders, Ryan said.
"Communities... need to be assured that all parties are supporting the public health response and that Ebola should not become further politicised in the process," he added.
Ryan said the UN health agency currently has enough vaccine stocks to meet its needs but doses may run short.
"We don't necessarily know which way this outbreak is going," he said.
More than 110,000 people have been vaccinated since the outbreak began. Neighbouring Rwanda and Uganda have also been vaccinating health workers.
Humanitarian groups meanwhile warned Friday of health risks faced by tens of thousands of people uprooted by the resurgence of violence in the east of the country.
Among them, some 7,000 displaced people are housed in a primary school where the only water source is a nearby river and there are not enough toilets, 18 non-governmental organisations said in a statement.
In such conditions, the "risk of disease spread is high", they added.
"This is a deeply worrying situation. These people fear going back to their homes and are being forced to live in cramped, unsanitary conditions in an area where Ebola remains a significant threat," said Tamba Emmanuel Danmbi-saa from Oxfam, one of the groups that signed the document.
"These people urgently need food and adequate sanitation facilities as well as clean water and health services."
The groups said violence in the region, with rival rebel groups competing for resources and power, made it very difficult for humanitarian aid to reach those who need it, with some 60,000 people displaced in April alone.
Many of them, added the NGOs, find themselves trapped between the Ugandan border to the east, a region in their own country plagued by violence, and another nearby that is riddled with Ebola.
"As a result, some displaced people are being left with little choice but to return to the villages they fled, where they are at risk of further attacks.
"Others are avoiding official border points and choosing to cross illegally through the forests along the border or by boat across Lake Albert. This also increases the risk of Ebola being spread, since people are not being screened as they would be at the official border crossings."
In the conflict-ridden country as a whole, more than 13 million people need humanitarian aid, the NGOs said.
More than five million have had to flee their homes, and Uganda is already home to more than 1.2 million refugees.

redpajama_set_name: RedPajamaCommonCrawl


Your signature lipgloss should be the perfect lipgloss to put on in a hurry but also make you look good. This class will teach you about color analysis and what colors look best on you, and you will make a lipgloss that is exclusively yours. Each participant will walk away with their very own lipgloss matched to their skin tone. Creativity is welcome, and a name for your lipgloss is encouraged. Best part? Elea Blake will write down the formula so you'll always have it within your reach.
Parties can be BYOB and bring your own food, but we do charge a $50 fee if parties extend past regular hours or if they take up our lip bar space for longer than the allotted time period discussed during booking! If the party is after our regular hours we require a minimum of 6 to book.
Along with all of the above, we have been known to host educational classes for local high schools. These classes involve empowering young women with the knowledge of how to dress their best, look their best, and excel in the art of body language. All classes are custom created depending on the group's needs, lunch is available if needed.
We are also offering the space for pop-ups on occasion. Contact Blake Wright at marketing@eleablake.com or call the studio for more information if interested.


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You are here: Home / Fires/Accidents/Disasters / Oklahoma tornado brings back memories for Parkersburg residents
Oklahoma tornado brings back memories for Parkersburg residents
May 22, 2013 By Matt Kelley
Residents of Parkersburg and nearby towns that were hit by an EF-5 tornado five years ago are remembering the events of that day, while following the latest developments in Moore, Oklahoma. A massive tornado demolished homes, schools, and everything else it's path through Moore Monday afternoon.
On Tuesday, authorities said the Oklahoma twister killed at least 24 people, including 9 children. Parkersburg City Clerk Chris Luhring says he believes part of the healing process involves helping others when you can.
"I think our goal for Moore, Oklahoma is to feel our love and support and our prayers for them," Luhring said. "We've sent groups to Joplin, Missouri and Mapleton (Iowa) in the past and people here don't do it for the credit either. Sometimes, people are leaving and not telling anybody. They're just telling their support group and trying to raise some funds."
Luhring notes community members have been quick to respond when disasters like the Parkersburg tornado strike other areas of the country. "I would be shocked if we didn't have some people right now trying to coordinate an event down to Oklahoma…when they're ready for volunteers, and that's important, to go when they're ready," Luhring said.
The tornado on May 25, 2008 killed 7 people in Parkersburg, while two died in nearby New Hartford. A private prayer service is planned for this Saturday to remember the victims. Luhring says most local resident are not interested in talking about what happened five years ago and would rather concentrate on the progress that's been made.
Filed Under: Fires/Accidents/Disasters, News


2015 solo cd by Big Bo. Award winning album: Best Dutch Blues Album 2015.
On his self-produced cd titled: Traveling Riverside, Big Bo presents 15 of his all time favorite songs. It is a tribute to the old masters of the blues, songs he has been playing during the last 30 years of his impressive career. The title of this brand-new cd metaphorically stands for a journey alongside the mighty Mississippi River, where we meet the music that was played back in the early days when the Blues was born.
Available on CD and double-LP.
LP contains a bonus track feat. Vera van Faassen on vocals.


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Traumatic Experience and Life-Events: The Burden on Physical Health View all 7 Articles
Sayyed Mohsen Fatemi
Harvard University, United States
Shazia Q. Jamshed
International Islamic University Malaysia, Malaysia
Monica Bocchia
University of Siena, Italy
Front. Psychol., 20 February 2019 | https://doi.org/10.3389/fpsyg.2019.00329
Chronic Myeloid Leukemia Patient's Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial
Lidia Borghi1*, Sara Galimberti2, Claudia Baratè2, Massimiliano Bonifacio3, Enrico Capochiani4, Antonio Cuneo5, Franca Falzetti6, Alessandra Iurlo7, Francesca Lunghi8, Claudia Minotto9, Ester Maria Orlandi10, Giovanna Rege-Cambrin11, Simona Sica12, Sharon Supekar13, Jens Haenig13 and Elena Vegni1
1Department of Health Sciences, San Paolo Hospital, University of Milan, Milan, Italy
2Department of Clinical and Experimental Medicine, Section of Hematology, University of Pisa, Pisa, Italy
3Department of Medicine, Section of Hematology, University of Verona, Verona, Italy
4Department of Oncology, Azienda Toscana Nord Ovest, Livorno, Italy
5Institute of Hematology, University of Ferrara, Ferrara, Italy
6Institute of Hematology, Centro di Ricerca Emato-Oncologico (CREO), University of Perugia, Perugia, Italy
7Hematology Division, Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy
8Hematology and Bone Marrow Transplantation Unit, San Raffaele Scientific Institute, Milan, Italy
9UOS Hematology, UOC Oncologiaed Ematologia Oncologica AULSS3, Mestre, Italy
10Hematology Unit, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
11Division of Hematology and Internal Medicine, "San Luigi Gonzaga" University Hospital, Orbassano, University of Turin, Turin, Italy
12Fondazione Policlinico Universitario Agostino Gemelli – IRCSS, Università Cattolica del Sacro Cuore, Rome, Italy
13Oncology Region Europe, Novartis Farma SpA, Origgio, Italy
Background: The main objective of this study is to gain further insights on how chronic myeloid leukemia (CML) patients involved in an interventional clinical trial with the purpose of reaching treatment free remission (TFR) phase, perceived and experienced TFR failure. TFR failure was defined for the individual patient as either not being eligible for drug discontinuation or as having relapse in the TFR phase with reintroduction of nilotinib treatment.
Methods: Using a qualitative approach, out of 25 patients with CML who experienced TFR failure 14 were interviewed. Patients' views and experiences were explored using in-depth interviews, analyzed using the Interpretative Phenomenological Analysis (IPA).
Results: The analysis of the interviews revealed that the experience of the diagnosis seems to have been lived as a traumatic break that has created a dichotomy, like an ambivalence in the ways in which CML patients perceived and experienced the whole disease journey, with contradictory feelings of both positive and negative emotions (e.g., a diagnosis of cancer, that is something distressing and of being afraid of, but also with a treatment and a life expectancies of which being grateful). This ambivalence of feelings was found to give meaning to the way in which patients cognitively and emotionally experienced the different steps of their disease history. Thus, four main issues, corresponding to different steps of the patients' journey, were identified: (1) the moment of the diagnosis, (2) the experience of the illness journey: disease and treatment, (3) the moment of "TFR failure," and (4) the impact of disease, treatment and relapse on the patient's life.
Conclusion: This qualitative analysis helps in understanding patients' perspective, both in terms of getting access to the inner subjective experience of having CML and its strict relationship with the involvement in a trial or its cessation. Clinicians should consider that the way in which CML patients feel engaged in a clinical trial, create expectancies about TFR or experience the TFR failure is linked to the process of coping with the diagnosis, which is characterized by ambivalence.
Chronic myeloid leukemia (CML) is a myeloid neoplasia characterized by the mutual translocation between chromosome 9 and 22 (Philadelphia chromosome) and by the BCR-ABL1 rearrangement, with a consequent synthesis of an uncontrolled tyrosine-kinase that induces increased proliferation, reduces apoptosis, and causes the entry of myeloid immature cells into the bloodstream (Rowley, 1973).
In the last decades, thanks to the introduction of first-generation tyrosine kinase inhibitors (TKIs) (imatinib), the molecular-targeted therapy in CML became a reality, with the consequent improvement of the outcome for more than 90% of cases. Notwithstanding imatinib already greatly improved overall survival and allowed patients to achieve high clinical response rates (Hanfstein et al., 2012), the introduction of second-generation TKIs (nilotinib and dasatinib) as first-line therapy allowed a higher percentage of patients to achieve deeper and faster molecular responses (MR). The excellent treatment option provided by TKIs are offering a survival comparable to that of the general population (Bower et al., 2016).
The newest guidelines of the National Comprehensive Cancer Network [NCCN] (2018) and of the European Society For Medical Oncology (ESMO) (Hochhaus et al., 2017) have recently proposed criteria for potential treatment discontinuation. In fact, in the latest years many studies clearly showed that about half of patients who achieved a sustained and deep molecular response (DMR) can discontinue treatment without losing their DMR, thus making the treatment-free remission (TFR) a reality. As recently published data suggest that the duration of DMR (Saussele et al., 2017) is important for maintaining TFR, the data derived from the ENESTPath trial will provide further insights. The primary objective of this trial is to elucidate the optimal duration of consolidation treatment before TFR attempt. Several variables have been identified as fundamental presupposition for TFR (length of therapy, depth of MR, type of TKI, line of treatment). Available data is mostly derived from interventional clinical trials with only Nilotinib having clear guidance for the TFR eligibility and the discontinuation procedure in the officially, health authority approved Summary of Products Characteristics, thereby leaving the process of decision making about interruption to each physician-patient dyad.
It is not difficult to imagine the emotional distress that this decision could induce, where patients could live this proposal as an unexpected and positive option, while others might see this moment as uncertain or risky. While patient's view in the management of treatment has been well recognized even by the authorities that included patient reported outcomes (PRO) in the process of the new drug submission packages and regulatory approvals (Amir et al., 2012), there is still a lack of knowledge about the factors affecting emotional well-being of participants to clinical trials (Hopwood and Thatcher, 1990; Aaronson, 1992; Kaasa, 1992; Cox, 2003; Wineman et al., 2003). Most of the published studies use quantitative instruments to mainly assess quality of life (QoL), with only few stressing the importance of a qualitative methodology to enhance the comprehension of patients' inner experience. A study published in 2003 (Cox, 2003) analyzed the emotional experiences of patients enrolled in phase I/II oncological trials. While the data obtained from the questionnaires revealed no changes over time, in-depth interviews adequately sketched some otherwise hidden aspects of the psychological, emotional, and social impact deriving from participation in a clinical trial from the perspective of the patient (Cox, 2003).
Focusing on CML, the majority of the already published studies assessed QoL using quantitative methods, such as the EORTC QLQ-CML24 (Efficace et al., 2012, 2014), FACT-LEU (Trask et al., 2013), or SF-36 (Ware and Sherbourne, 1992) questionnaire, producing some interesting results. In particular, these studies pointed out a lack of knowledge about TFR, as its emotional perception is yet to be adequately evaluated: in a series of 87 patients, 81% of them indicated that they would be willing to attempt TFR, especially those who experienced previous toxicities. On the other hand, the reluctance to discontinue treatment was often associated with a need for additional information and perhaps with a not fully confident relationship with the respective referent physician (Villemagne Sanchez et al., 2018).
In this panorama, we conducted a multilevel study employing a quantitative and qualitative approach for exploring CML patients' psycho-emotional outcomes, QoL and inner experiences involved in different moments of disease history. In particular, the aim of this contribution is to present results from qualitative interviews about the subjective emotional experience of those patients who experience the TFR failure.
The present contribution is part of an Italian sub-study examining patients' psychological and emotional characteristics, involved in ENESTPath trial, a phase-3 European multicenter clinical trial involving 620 patients from 22 different countries. Enrolled patients received 12 months of nilotinib 300 mg BID as induction phase followed by further 12 months of consolidation. Patients achieving a sustained DMR (≥MR4 in 4 of 5 PCR assessments, including the last assessment, in the last 12 months) at the end of the first 24 months of treatment were either randomized to a further consolidation period of 12 months (Arm 2, 36 months of total treatment time) or discontinued immediately for TFR (24 months of total treatment). The primary endpoint of the ENESTPath is the assessment of the potential impact of a longer duration of consolidation (12 months vs. 24 months) on molecular relapse rate in the first 12 months of TFR (>MMR). All patients not in a stable MR4 and therefore not eligible for randomization according to the above mentioned criteria had to discontinue the trial.
The Italian sub-study involved 31 patients and assessed patients' emotional experience during and after stopping nilotinib, and after trail discontinuation. To obtain a comprehensive evaluation of patients' psycho-emotional outcomes and adopting a multilevel perspective, both quantitative (questionnaires) and qualitative (expressive writing and interviews) methods have been used.
This paper presents qualitative data gained from the interviews on patients who "failed" the trial, i.e., patients who had to start retreatment with Nilotinib because they relapsed in the TFR phase or patients who had to discontinue the trial because they were not eligible for randomization by month 24 after the induction and consolidation phase.
Participants are all patients enrolled in the Italian sub-study who accepted to be interviewed because they experience the psychological phenomenon of "TFR failure" as they were ineligible for the randomization (unstable MR4 during the consolidation, early discontinuation of the main study: End of Phase – EOP) or they relapsed during TFR (loss of MMR, or the confirmed loss of MR4). Patient recruitment relied on convenience sample, as the group of interest was limited, as only Italian patients were involved. Participants were enrolled according to the maximum variability criterion, unless data saturation of the following variables: patients' gender, patients' age, years since CML-diagnosis.
The study was carried out in accordance with the GCP rules. As the Italian substudy is multicentric and involved many Centers (hospitals) all around Italy (Bari, Bologna, Cona, Livorno, Milano 2 Hospitals, Mirano, Orbassano, Pagani, Parma, Pavia, Perugia, Pescara, Pisa, Reggio Emilia, Roma 2 Hospitals, Taranto, Verona, Vicenza), the research protocol was approved by the Health Authorities, by the Ethics Commitee of the coordinator site (AO Università di Bologna Policlinico S. Orsola – Malpighi, Bologna, Italy) and by all the Ethics Commitee of all the involved Hospitals. All subjects gave written informed consent in accordance with the Declaration of Helsinki.
Adopting a qualitative–interpretative methodology, in-depth unstructured interviews were conducted within one month from the trial discontinuation to explore patients' emotional experience of the phenomena "being ineligible for randomization" or "failing TFR." In-depth interviews have been widely used in the medical literature (Greenhalgh and Hurwitz, 1999), in particular when the aim is to reconstruct the meanings patients given to their experiences. Narration approach allows the speaker to reconstruct and reinterpret past, present and future events, making them understandable and communicable. Interviews were guided using open-ended questions (e.g., "Tell us about your illness experience, including the last trial period, starting from the point that is more important for you") and followed patients' narrative flow; the interviewer only facilitated the narration. Patients were asked to describe the course of their disease and their involvement in the clinical trial, including the final moments of trial discontinuation. Interviews were audio recorded and fully transcribed verbatim.
Verbatim reports were analyzed according to the principles of Interpretative Phenomenological Analysis (IPA) (Smith, 1996; Eatough and Smith, 2008; Smith et al., 2009), an inductive method of analysis that through an in-depth interpretation of individual narratives allows grasping the essence of how people attribute sense to their experiences (Conroy, 2003; Richards and Morse, 2007). IPA is based on the hermeneutic-phenomenology approach, in which a double hermeneutic focus is applied: the analyst interprets the participants' interpretation of their lived experience. IPA is a widely used approach to qualitative research in health psychology, as it is particularly suited to discovering subjective processes through which patients make sense of their symptoms or diseases (see, for example, Griffiths et al., 2011; Hilgart et al., 2013; Vegni et al., 2013). For this reason, a level of homogeneity of experience (in this specific case, CML patients experiencing the discontinuation or return to treatment) is important in order to ensure access to a comparable experience across the group as a whole. Through the process of IPA, it is possible to uncover implicit beliefs and emotions that are carried in the stories by the deep analysis of their verbal statements, although writers are not necessarily completely aware of these psychological states from a cognitive viewpoint (Smith and Osborn, 2007). The analysis proceeds as a spiral from details to the whole, from one theme to the complexities of theme, from narratives to concepts, and again to narratives. Indeed, IPA is an iterative inductive process that starts from the detailed reading of the texts aimed at gaining a holistic understanding of all the collected narratives (Eatough and Smith, 2008).
In the present study, complete verbatim reports of the interviews were independently analyzed by two researchers (LB and EV), one of whom conducted the interviews. In the early stage of the analysis, the researchers took notes of their understanding of the text and of their preliminary insights about the meanings that participants attribute to their experience. A detailed case-by-case analysis of individual transcripts was conducted with the aim of identifying perceptions and emotions of patient's journey through CML and the tria. Adeeper analysis was then conducted in order to further understand patient's experience. Core themes were generated in two ways: (1) by clustering similar themes of the various accounts into more exhaustive categories, and (2) by formulating an interpretative hypothesis based on issues whose sense could not be understood separated but were instead interpreted globally as a whole. Preliminary results were discussed in depth adopting a triangular approach (a third researcher -SG- was involved), to reach an agreement on the themes. The analysis process was conducted during the final stage of data collection in order to verify the hypotheses that emerged from the interpretation process with patients. Finally, excerpts of the accounts were selected to exemplify the results.
The psychological Italian sub-study of ENESTPath enrolled 31 patients, of whom 25 patients experienced TFR failure; out of these 14 were interviewed as far as the phenomenon of TFR failure, including 8 ineligible for randomization due to unstable molecular response, and 6 patients who relapsed during TFR and had to be retreated. Patients were 11 males and 3 females, with a median age of 57.5 (range 36–82), and a relatively long history of disease (median = 10 years, range 3–15). Patients were mainly married (85.7%), with a medium-high educational level (58.3% high school, 25% graduates). The mean length of the interviews was 39′53″, ranging from 28′07″ to 53′54″.
The analysis of the interviews revealed an underlying theme that runs across the whole disease history, from the moment of the diagnosis to the experience of "TFR failure" due to unstable MR4: a dichotomy, like a split that seems to originate from a sort of traumatic break experienced by patients when they faced the CML diagnosis. This ambivalence of contradictory feelings with both positive and negative emotions (e.g., a diagnosis of cancer, that is something distressing and of being afraid of, but also with a treatment and a life expectancies of which being grateful) characterized the way in which CML patients cognitively and emotionally perceived and experienced the different steps of their disease journey.
Thus, four main issues, corresponding to different steps of the patients' journey, were identified: (1) the moment of the diagnosis, (2) the experience of the illness journey: disease and treatment, (3) the moment of "TFR failure," and (4) the impact of disease, treatment and relapse on the patient's life.
Experience of the Diagnosis
The first interesting observation is that all interviewed subjects, when asked to talk about the early "TFR failure," started their narration from the experience of the diagnosis. Indeed, the majority of patients remembered the diagnosis itself in a dichotomous way: as a traumatic experience (in which the weight was greater when the patient's perspective was far from that hypothesis), but at the same time as something wrong that was rapidly overcome, as "all goes well."
"The doctor called me and told me it was leukemia... that moment was a blow, because I was really far from that hypothesis" [5].
"Fifteen years ago, when they told me I had this disease, I took it kind of hard at first, because I started to think about why this disease came huh... and I was worried I would no longer have that tranquility I had before" [6].
Interestingly, the words related to the diagnosis were not emotionally charged, but rather they appeared in a metaphoric and evocative way.
"I took two days to do all the investigations... it was just the day when the Twin Towers tragedy happened, I just saw it, I was hospitalized... in fact a parallelism." [4]
Moreover, it was a seemingly common aspect that the moment of the diagnosis was not remembered in its details; nobody fixed the narration on the way or the sentences that the physician used for communicating the CML presence, as if that moment still represented a trauma from which patients tried to defend themselves from; however, patients still remembered doctors' reassurances.
"The doctor told me: 'yes you have leukemia... but... not all patients have the same leukemia, you have this type (CML), the others have the worst, you the best... you have to fight for your life …"' [9].
"In the second visit after the exams the doctor wanted to explain to me... he reassured me, he said 'no…', he explained me that there's like a crazed chromosome called Philadelphia that creates these... overhangs.. and he told me... 'we have to keep it under control'... he just diagnosed me with chronic myeloid leukemia and told me it was not at acute levels, that it was not, well... serious, it was only to be taken care of, to be kept under observation and to be followed by a therapy" [11].
"The first moment I huh...I did not care so much, maybe because huh...the physician said to me 'don't worry, it's not (serious), but you must do the blood tests' ... later...when they told me the effective diagnosis hum... huh... I went home and I started crying" [11].
Finally, regarding the strategies used in coping with the diagnosis, patients reported to face the disease as something unexplainable and so difficult to control, lived in a passive way but precisely for these reasons they faced the diagnosis denying and minimizing its load.
"It was a nonsense search, I realized it later, but it was the thing that struck me most... looking for a cause that maybe there wasn't... I thought the fault was mine, some negligence or something that had brought me to the disease, the 40 years before... what was wrong? Absurd to think but my thought was there..." [6]
"Initially this path was a little bit '... as in dealing with all the diseases you always found difficulties…I made like a lineup to understand how I had to go through my life, I told myself 'I want to face open-mouth or I want to drag myself throughout my life... I told myself I am studying a path that would help me to leave this... this difficulty that I have encountered" [7]
Experience of the Illness Journey: Disease and Treatment
Patients perceived the disease as invisible, something that does not affect their lives; at the same time, they had difficulties in thinking or talking about death.
In particular, patients reported the difficulty in creating a mental space to think about the disease during their life, which is probably related to the unsolved process of coping with the diagnosis.
"I want to continue, let's say, I would like to continue hum... always following that instinct that led me, when there are empty spaces in which I'm not doing or thinking about something else, I have a moment of reflection, to occupy thinking about new things and not to what is happening to me, trying to continue my life normally... until now I have succeeded" [6].
Some patients referred in an ambivalent way both to the disease, as something present but not visible, and to the treatment, as the thing that testifies the reality of the illness; at the same time, therapy was something to be grateful for.
"[the disease] is like a daily and silent war because maybe from the outside, all in all, it is not like those who do chemotherapy, it's an everyday war, twice a day you remember this thing, then, all in all, I learned to live together with it, it becomes an automatic thing like eating, drinking, so in short" [4].
"I am one in a million, a Highlander…" [14].
Thus, patients reported a good adaptation to the treatment, something that began to be integrated in the patient's life; however, all the individuals referred to the treatment as essential for life and survival.
"Doctors proposed to me to move on to this new drug and…I can say that I lived in a positive way even if at home I was afraid to take this new substance...let's say yes, it was something dramatic rather than tragic; however, I learned to live with it, just because I saw that there was this drug I did not live it [bad]...it started to be part of me" [4].
"The drug was a perfect cure … it was a life saver" [1]
"We were in the Amazon rainforest and I told a friend 'this drug is a lifesaver for me, that's what I need to take!' I have it with me but I might lose this backpack so... please carry a dose for me...just in case." [2]
Experience of TFR Failure
Patients' perception of the TFR failure, its meaning and its impact can be understood when their individual experience and disease history are considered. In particular, the experience of failure proved to be linked to the imagined or lived experience of stopping treatment. Patients' experience of failure always reflects a slightly negative emotional experience.
"I did not see it (the trial discontinuation) in such a negative, such a dramatic way that I would say 'from now on how will I cope with life? How will I do it?' I accepted it pretty well, I think I accepted it well…because undoubtedly that day that doctors told me about the disease I thought... I said: 'Why I got sick?"' [9]
"This course of treatment presented some negativity, some aspects that could create me psychological difficulties... these things here (sexual difficulties)... it was not a path just so negative or so positive... a normal path, let's say" [6].
Patients referred to the trial discontinuation as "a little bit of…not dejection…but a bitter pill" and as "stumbling" during the care pathway.
"I have lived the path a bit like a bicycle climb... you come halfway up and they tell you that the road is closed... it left me a little bit like this..." [12].
"Undoubtedly you hope... how can I say … you let yourself believe that you manage to suspend the drugs and return to life...actually I have a normal life, I have only to take these pills but my life is in some way normal…we have tried to remove it completely, it did not happen and I went ahead in the same way" [6].
"If I have managed to be included in that group [of patients eligible for TFR] I would have lived it a bit like a prize after so many years of treatment, then, all in all, compared to other situations I tend to say 'I have to thank for it'...that's ok after all" [4].
"When I was small, I had a puppet of the type that, when you beat him, always gets back on its feet... I am like this puppet who always puts himself in position... I do not know if it's thoughtlessness" [2].
The ambivalent view of the clinical trial and of patient's early discontinuation was also related to the comforting feeling of being engaged and more closely cared for during the trial, so that the discontinuation has been seen as "an abandonment."
"This [EOP] has a little 'knocked out because hum... because I felt good, I felt followed and the check-ups were often... and now I see myself as a bit' set aside. I always continue with the pills and my therapy, but I am no longer part of this protocol, I am a bit 'thrown down" [11].
The perception of unpleasantness gains meaning when linked to the idea of stopping treatment, which is seen as something useful but at the same time demanding: the therapy often appears to be the only sign that still remind of the presence of the disease, but it also represents a sort of "comfort zone" for patients, something they are used to, and that represented a sort of lifesaver.
"I suspended the treatment for a week... and now I'll have to restart with it; however, I... I'm in doctors' hands because... they are the ones who give me life... if I suspend [the treatment] I know that the disease will reappear within a month" [9].
The Impact of Relapse on the Patient's Life
CML was perceived as something invisible but present, like a ghost that permits us to conduct normal lives but at the same time undermines future plans, changing the perspective in which patients live their lives; patients reported to live for the day, without too many expectancies or long-term plans.
"I don't want to have high expectations or hopes, I follow the course of events…I say to myself 'let's see if it is something that can lead me towards something good. You will discover it by living" [10].
"Honestly I am living my life day by day... I do not expect to do great things later because I do not know if... if I will get there... I do not have... thoughts about the future... tomorrow is another day... as the disease has a sudden outbreak" [9]
"They reassured me saying that there are other drugs…let's say, I don't live the day without worries about the future, because obviously I think about the future" [4].
"The road has changed... for e.g., Italy is now a country where work is not easily found. I am going to look for work somewhere else, gain experience abroad. However, there is always this unknown about going abroad as I always have this factor (disease) to consider" [8].
In particular, the disease seems to have a sort of deadly effect on the procreative plans, and reproductive successes appeared to be "miracles." Moreover, with regard to their children, patients reported to be worried about not being able to fully perform their parental roles and functions.
"Since the beginning, they clearly told me that I probably would not have children...I remember that in front of the doctor I started crying, because maybe at 27 it was something that I was postponing … I remember that I cried so much…then I started to accept the idea…and that is not something I suffer from, but maybe if it did not happen I would have had (a child) like everyone else" [4].
"After the illness, my wife and I decided not to have another child... all in all it's a small regret. But that's ok" [3]
"They treated me... they gave me therapy … and I had a child... that is, I managed to have a child...I thought that the child could have problems and so on, but he was born healthy" [9].
"Sometimes, when I'm alone in my car, I also have these weaknesses... like any human person, let's say, I don't rock the world but I'm just starting to think, I've got my family... And I worry not about myself but about my children" [6].
This sub-study represents one of the few available studies that face up to the emotional aspects of living the CML in the new era where TKIs offer a long survival with, in the majority of cases, a good QoL. Despite new drugs for CML offer high chances of optimal responses (Hochhaus et al., 2016), our interviews suggest that patients could experience emotional distress during the illness journey.
We suggest that our qualitative approach allows to explore the inner emotional experience in a way that integrates the most common quantitative approach: through a bottom-up method and a "majeutical", way individuals could exteriorize some introspective aspects adding additional information to the a priori items of questionnaires.
In particular, it was interesting that at the beginning of the narration, all patients remembered the moment of diagnosis, even if the interviewer, thus exemplifying that this ghost still survives even after several years of an effective treatment, did not require it. On the other hand, in spite of the efficacy results observed with nilotinib, in all cases the fear of long-term planning remains, thus highlighting a further aspect previously undetected by the literature based on quantitative methods (i.e., questionnaires).
As for the diagnosis, it is true that our patients firstly remembered the moment of the diagnosis as a shock, like a traumatic break, which is difficult to express and that probably is not yet metabolized, but our patients tried to rapidly reorganize their lives around the idea that "CML is curable, and thanks to the treatment they could have the opportunity of conducting normal lives." This result is consistent with the findings of a recent study exploring, through narrative diaries, both the impact of the disease on CML patients' everyday lives and the psychological impact of their being presented with the chance to suspend their therapy (Graffigna et al., 2017). The study highlighted how patients described the communication of the diagnosis as a "bolt from the blue," something that was unexpected and disrupted patients' lives.
The drama of the diagnosis as lived by patients had some common characteristics with the emotional experience of receiving a piece of bad news. There is a wide literature on bad news highlighting the fact that the doctor's communication of a bad news is worse (and the processing thereof more difficult and traumatic) as the patients is farther from it (Buckman, 1992). Indeed, CML patients usually did not experience symptoms or problems before the diagnosis and diagnosis often occurs by chance (e.g., regular blood tests or blood donation). Buckman suggested that the physician should left time and space to patients emotional reaction and processing of the bad news during its communication (e.g., step-by-step communication).
Moreover, CML patients reorganized their lives after the diagnosis, and this process seemed to be driven by the dramatic change of the CML panorama: the disease has shifted from a mortal to a chronic condition, and nowadays the perspective is that it could become curable. This rapid progress seemed hard to integrate in patients' mind, and often did not settle in a congruent reorganization of the patients' perspective of disease. Some patients described their CML experience as a "silent war": this metaphor was often retrievable in cancer patients' narratives (Skott, 2002), and was found to be particularly powerful in revealing CML patients' illness experience (Graffigna et al., 2017). Indeed, it highlights the ambivalence of the emotional and cognitive experience of being a CML patient that originates from the moment of the diagnosis, like a wound beyond healing. Our data interpretation seems to be coherent with the whole illness journey, particularly the ambivalent connection to the treatment and its discontinuation.
Another innovative aspect of our study is that to our knowledge it is the second study facing the TFR in CML from the psychological point of view. The Australian group (Villemagne Sanchez et al., 2018) recently reported the answers from 84 patients on their feeling about the TFR: half of them received imatinib, and the rest nilotinib or dasatinib. No significant difference in the emotional perception of TFR according to the type of TKI was observed. Confidence in the physician and the possibility of eliminating toxicities resulted in the most frequently reported reasons for willingness to attempt TFR. In that series, only 7 participants expressed anxiety or fear about stopping treatment (Villemagne Sanchez et al., 2018).
Moreover, the study by Graffigna et al. (2017), exploring reactions to the possibility of interrupting treatment, is in some way a pre-step of our study that interviewed only patients who really entered into a clinical trial with the goal of TFR.
Our findings showed that the way in which patients gave sense to the experience of TFR depended on their whole journey, beginning from the diagnosis. TFR was also lived in an ambivalent way: with hope, as a possibility to discontinue therapy, but also with fears, because often patients linked the treatment with their life safety. In this regard, many patients who discontinue the TKI (estimated to be up to 30%) experience musco-skeletal pain (Hochhaus et al., 2017), which is described as "TKI withdrawal syndrome" (Richter et al., 2014; Galimberti et al., 2015). This possible event also needs to be very carefully explained to the patients, as the first thought when experiencing those symptoms might be that they have a relapse.
Our interviews showed that patients were reluctant to think that the success of TFR could lead to healing. Indeed, we have to consider that for many years physicians told patients that TKI was saving their lives, and that they needed to take it every day because compliance is the first step for achieving a good response (and survival). Now the physicians need to deal with these new messages, as newest clinical data clearly show that a life without drugs and a potential "operative cure" is possible. Understanding the patient's perspective and lived experiences is undoubtedly an asset for more efficient health interventions and improved clinical compliance.
Finally, the way in which our sub-study CML patients gave sense to the experience of the early trial discontinuation in the light of their illness history is likewise a relevant finding of our work: this result is really new, but some studies seemed to point in the same direction, as they proved that patients' emotional experience of being involved in a clinical trial depends on the feelings related to the disease itself and experienced before entering into a trial. Wineman et al. (1996), for example, suggested that subjects entering into a clinical trial for multiple sclerosis with high levels of illness uncertainty and stress were likely to experience mood disturbances and felt less hopeful about treatment effectiveness. Moreover, the pattern of relationships among uncertainty, coping, hopefulness, and mood did not change throughout participation in the experimental trial (Wineman et al., 2003).
The methodology used, although fundamental for the aim, implies some limits that the qualitative research could present. In particular, the study is based on a small sample of CML patients. However, we interviewed only patients receiving nilotinib as part of the ENESTPath trial; this ensures a population that comes from various hospitals in different areas of Italy and that is homogenous in terms of treatment duration and therapy management. As in all qualitative studies, the findings are not statistically generalizable, but offer some clinically useful insights to improve CML patients' care. The study constitutes an interesting stimulus to favor a process of understanding CML from a patient-centered view, which could help physicians to improve their relationship with patients and the confidence that emerged as fundamental in order to stimulate in patients the willingness to being engaged in a clinical trial.
The Italian sub-study clearly showed how CML patients perceive early trial discontinuation, and the way they give sense to it appears to have a strict relationship with individual disease experience. This qualitative analysis helps in understanding patients' perspective, both in terms of getting access to the inner subjective experience of having CML and of being involved in a trial or its cessation. The insights provided show once again that patients' experience of the diagnosis, in its primordial ambivalent nature, with the co-existence of opposite feelings, influenced patients' perception of the disease, of the treatment, as well as of the eventual patient's failure of the clinical trial. There is a need to develop strategies to cope with patients' emotional experience and guarantee that their psycho-emotional wellbeing is one of the objectives of each new clinical trial.
All authors contributed to conception and design of the work and interpretation of data, and revised the manuscript critically for important intellectual contents and gave their final approval of the version to be published. LB, SG, CB, MB, EC, AC, FF, AI, FL, CM, EMO, GR-C, and SiS contributed to the acquisition of data. LB, SG, and EV analyzed the data. LB and EV drafted the manuscript.
The study was supported by Novartis Pharma AG in relation to the Sub-study Clinical Trial Protocol-CAMN107AIC05 "CML patient's voice: A pilot study exploring the emotional experience of patients during the ENESTPath study and its discontinuation".
LB received a research fellowship from her Institution on the project titled "CML patient's voice: A pilot study exploring the emotional experience of patients during CAMN107AIC05 study and its discontinuation" funded by Novartis Pharma AG. She declares it does not influence her role and contribution to the manuscript. SG, CB, MB, EC, AC, FF, AI, FL, CM, EO, GR-C, and SiS received economical support for some studies from Novartis, but it did not influence their roles and their contribution to the manuscript. ShS and JH are employees of Novartis Pharma AG. EV received grant support, paid to her institution, from Novartis for the research project titled "CML patient's voice: A pilot study exploring the emotional experience of patients during CAMN107AIC05 study and its discontinuation." She declares it does not influence her role and contribution to the manuscript. This sub-study was funded by Novartis Pharma AG. The study participants have not received funds for their participation in the study. The results presented in this manuscript have not been previously published except an abstract, including preliminary data, that was presented but not selected for presentation at the 59th Annual Meeting and Exposition (December 9–12, 2017); however, the abstract was published online-only on the ASH abstracts site on December 8, 2017, and became part of the permanent ASH and Blood abstracts archive.
We thank patients, investigators, and staff from all the participating sites for their kind collaboration and help. We also thank Michela Maxia, Silvia Poli, and Carolina Pozzi for their help in the data gathering.
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Keywords: chronic myeloid leukemia, nilotinib, ENESTPath, TFR, inner emotional experience, psycho-emotional outcomes
Citation: Borghi L, Galimberti S, Baratè C, Bonifacio M, Capochiani E, Cuneo A, Falzetti F, Iurlo A, Lunghi F, Minotto C, Orlandi EM, Rege-Cambrin G, Sica S, Supekar S, Haenig J and Vegni E (2019) Chronic Myeloid Leukemia Patient's Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial. Front. Psychol. 10:329. doi: 10.3389/fpsyg.2019.00329
Received: 28 May 2018; Accepted: 03 February 2019;
Published: 20 February 2019.
Sayyed Mohsen Fatemi, Harvard University, United States
Monica Bocchia, University of Siena, Italy
Shazia Qasim Jamshed, International Islamic University Malaysia, Malaysia
Copyright © 2019 Borghi, Galimberti, Baratè, Bonifacio, Capochiani, Cuneo, Falzetti, Iurlo, Lunghi, Minotto, Orlandi, Rege-Cambrin, Sica, Supekar, Haenig and Vegni. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Lidia Borghi, lidia.borghi@unimi.it


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text:
Science Has No Clue How Bicycles Really Work
Travis Okulski
The saying "just like riding a bike" has been around for ages. It refers to doing something that's easy to understand. But there's irony in that: Physicists have no clue how bicycles work, making them some of the most complicated things in the world.
For more than a century, the assumption was that the gyroscopic forces of the wheels are what kept a bike upright. When a riderless bike is moving quickly, you can push it slightly and it won't fall over. That was the assumption.
But that was, apparently, wrong.
A few years ago a deep dive was taken into "bicycle science." Guess what? They found that the gyroscopic force wasn't enough to keep the bike upright. That means that decades of science and assumptions based in science have been totally wrong.
We can send a man to the moon. We can explore the depths of the ocean. We can make hydrogen power things. We have a pretty good idea about how the universe started. But we have no clue how one of the simplest mechanisms, something that we all take for granted as one of the easiest ways to get around, works.
That seems messed up, doesn't it?
(Hat Tip to @joshpetri!)
Photo Credit: Getty Images