Category: Politics

THE CHILDREN – UPDATE

Mary Ellen Turpel-Lafond is no longer B.C.Representative for Children and Youth in B.C. What a loss for the people and children of B.C.  The position has, not surprisingly, been given to a politician (1).

The care of The Children did become an election issue. The BC NDP and Greens have made promises, in their election platform, to help the children.  The BC Liberals don’t have anything specific to the children in care but have made promises (see below).  It is good that the children became an election issue.  BUT, this is only the first step.  Because, as we know, politicians will say anything to get elected and frequently afterwards, partially or totally ignore the promises.   SO, after the election the people and media, will have to hold the politicians accountable, make sure any changes are beneficial to the children, demand constant updates on the welfare of the children and keep demanding the truth so the children get the care they need.  The Children only have YOU, the people, to look after them.   As Stephen Gantz says: “If children in foster care are wards of the state, we’re all their parents”. (13)

Katie Hyslop, at TheTyee.ca, has written a series of articles on The Children in government care and youths at risk. Go to TheTyee.ca, enter, in the search box, Katie Hyslop to read these articles. Be prepared, some will just break your heart.

B.C. Minister of Children and Family Development Stephanie Cadieux had a complaint:

  1. “Shortly after the first article appeared, I received an email from a ministry spokesperson that challenged one statement in one article. The sentence in question describes “Michie,” a young woman who found, as we reported, ‘that all the supports she and her foster parents had been receiving from British Columbia’s Ministry of Children and Family Development disappeared’ on her 19th birthday. “(4) The government states that there are a range of supports. “Two programs top the ministry’s list of services they want you and youth leaving care to know about: Agreement with Young Adults, and the Youth Educational Assistance Fund.” (4)  ”But youth workers and the acting provincial Representative for Children and Youth interviewed by The Tyee emphasized there are barriers to accessing and benefiting from these supports that vulnerable youth can’t overcome.” (4)   Katie Hyslop also found that the programs had restrictions which eliminated many youth.  Even for those who could qualify the government had barriers; for example, you must be in rehab but there aren’t enough rehab spaces.  Or, the youth could qualify if they were in a life skills program but there is a long waiting list for this program. “So, yes: everything the ministry says is true: YEAF, AYA, and other programs do exist to maintain support for youth leaving Crown care at age 19. But our earlier reports were also accurate: many youth find those supports hard-to-impossible to access. None picks up automatically when youth age out of care; individuals must find and apply for each one separately. All impose some sort of qualifying restriction. And even when youth do qualify, actual help may not be ‘available.’” (4)  “Some are available only for former foster youth and not for others in distress (the wider focus of my reporting).“ (4)  Children’s representative Mary Ellen Turpel-Lafond called Agreements with Young Adults (AYA) a smokescreen that is not helping these vulnerable teens. (19)   This is a common tactic of the government – look at this great program we are offering, but if you look closely at the program you will see all the holes, all the barriers that prevent the targetted people from using the program.  I doubt programs will ever be ‘perfect” but some (many?) of the government programs are so badly designed/implemented that it looks like they were intended to fail all but a few. Is it a case of the government getting credit because they have a “program” without actually giving much (money saved to go into the pockets of “other people”)?

The government is also complaining that they are not getting credit for PROMISING to implement Grand Chief Ed John’s 85 recommendations and the “significant funding increase the ministry received under Budget 2017 to help improve outcomes for Indigenous families”. (2) Maybe that’s because they haven’t actually done anything yet except make promises.  Maybe they will get credit when the 85 recommendations are actually implemented and not, as so often happens, forgotten or only a few recommendations are implemented.  Maybe they will get credit when the money actually reaches the children and is not spent on meetings trying to decide how to spend the money (as has happened).  But, maybe before giving credit we need to ask why “so many children had to die and youth in care had to suffer neglect and abuse for the government to be shamed into acting finally on child protection services,” as pointed out by senior economist Iglika Ivanova of the BC Centre for Policy Alternatives.  Maybe, before giving credit, we need to ask why the Ministry of Children and Family Development budget will increase 10 per cent this fiscal year (an election year) only to be followed by two years of spending freezes; in other words, the government is giving and then taking away as the Ministry will have less money in future years because the funding won’t keep up with even the rate of inflation.  Maybe we have to ask why, after all these years of having children in government care, the system is still such as mess.  (20)

I am also concerned that Christy Clark has said that additional funding is being provided to address recommendations in Bob Plecas report. (7) Some of his recommendations, supporting recommendations made by Turpel-Lafond, I believe are good and I am glad that there will be money, hopefully to implement them.  But some of his recommendations, as identified in a prior post (Children Hurt, Dying in the Care of the Politicians, 2014/04/12), I believe will undermine, even more, the care of the children; in particular, eliminating the oversight function of the Representative of Children and Youth.  Will eliminating the oversight function be just a means of hiding what is happening to the children?

Katie Hyslop tried repeatedly for the past three years to get an interview with B.C. Children and Family Development Minister Stephanie Cadieux, including when she was preparing her series. (6)  She also tried to get an interview with Minister Terry Lake. (6)  She is still waiting. (6)  Cadieux did, however, send another email to criticise her series: “Ministry of Children and Family Development sent emails asking why I had not included additional details about education funds offered to youth aging out of care. Those funds are not available to all youth with care experience, do not provide mental health or addictions help, and are not substantial enough to cover household and school expenses on their own. (6)  Unfortunately, I have learned that this is another common tactic of the government.  They will respond if they think it makes them look good but will not answer questions that presumably would be incriminating. So, with the government, not answering a question, provides it’s own answer, they have something to hide.  But, as Katie Hyslop says:  “I’d really like to speak with either of them. More to the point, I think, B.C.’s citizens deserve to hear from them, outside of canned media events, on matters as important as the well-being of the province’s most vulnerable youth.” (6)  And, citizens do have a RIGHT to hear the truth about how the government and it’s programs are run, even if it doesn’t make the politicians look good; this is supposedly the people’s government with the people’s money paying for it.  The people have a RIGHT to know what is going on so they can decide if it is acceptable, and if something is not acceptable, the people can help find solutions.

Paul Willcocks article (9) also has some good suggestions.

“Linda Reid, now the Speaker, then the Liberal critic for children and families, demanded a needs-based budget. Figure out first how to meet the needs of children and families, and what that would cost. Build the budget around that (even if some hard choices might be needed). Instead, the Liberals have treated the ministry like any other, imposing arbitrary and damaging cuts or freezes.”

“Look for a party that doesn’t just promise more money, but a new model.” (9)

“Another simple test is the parties’ positions on aging out. The current policy of basically cutting kids adrift at 19 is destructive and costly. Parents know teens, especially teens who have often experienced difficult childhoods in care, are not magically ready at 19 to survive, let alone thrive, on their own. Look for a party that will increase that age, with phased support that lasts four or five more years, perhaps decreasing as the youths find their way. Polls have found broad public support for increasing the age at which youth lose supports.” (9)

Stephen Gantz has also suggested some good ideas, such as:

  • “Ensure youth have at least one adult in their life, family or not, whom they can rely on” and I believe he means even after exiting the system;
  • “If they leave care early, let them come back whenever they need to.”(13)

So, no matter which party “wins” the election, whenever the politicians say they are spending money on “fill in the blank” (but especially their own raise and putting money into the fake “prosperity fund” (3)), ask them if they have taken care of the children. Are the children living in a safe, stable home (10, 15, 16), is enough effort being put into finding them permanent homes, are there enough substance abuse beds (4, 12, 14, 16, 17), are there enough mental health services (11, 12, 15, 16), are there sufficient housing and other supports when they leave government “care” (dropping the youth at a homeless shelter should NOT be an option) (4, 13),  are there sufficient staff to adequately look after the children (9), have all the children leaving government had a complete, current “aging out” interview and plan (4), so the children/youth can leave government “care” as healthy individuals.  Or, to slightly rephrase Paul Willocks, will the government continue to have an underfunded, dysfunctional system that fails the children repeatedly, even when the need for help is obvious. (9)

 

  1. Bernard Richard, Office Representative of Children and Youth
  2. Minister’s statement on representative’s report – BC Ministry of Children and Youth, 2017-03-30
  3. 117 BC Liberal Falsehoods, Boondoggles, and Scandals: The Complete List – TheTyee.ca, 2017-04-10 – FALSEHOOD: No LNG Funds Funding LNG Prosperity Fund
  4. Ministry Says Supports ‘Available’ to Youth Exiting Province’s Care. How Available? – Katie Hyslop, 2017-02-06, TheTyee.ca
  5. Number of drug treatment beds for youth down 25% despite fentanyl crisis – Eric Rankin, 2016-09-27, CBC News
  6. Getting BC Ministers to Talk about Struggling Kids Proved Impossible – Katie Hyslop, 2017-02-06, TheTyee.ca
  7. Budget Shortchanges BC Kids And Youth, Say Critics – Katie Hyslop, 2017/02/22, TheTyee.ca
  8. Absentee caregiver was receiving $8K a month before teen’s suicide: report – Andrew Weichel, 2017-02-06, CTV
  9. It Didn’t Have to Happen is Way: Government Still Failing Vulnerable Youth – Paul Willcocks, 2017-02-10, TheTyee.ca
  10. British Columbia Children and Youth In Care At Risk Of Sexualized Violence – RCY Report – Office of the Representative For Children And Youth – 2016-10-04
  11. Long Waits For Mental Health Services Persist Despite Tragic Death Of First Nations Teen – Office of the Representative For Children and Youth, 2016-08-08
  12. For Some Kamloops Youth, It’s Easier to Get High than to Get Help – Katie Hyslop, 2017-01-23, TheTyee.ca
  13. Shutting Down the ‘Pipeline’ from Foster Care to Homelessness – Katie Hyslop, 2015-09-15, TheTyee.ca
  14. Number of drug treatment beds for youth down 25% despite fentanyl crisis – Eric Rankin, 2016-09-27, CBC News
  15. Absentee caregiver was receiving $8K a month before teen’s suicide: report – Andrew Weichel, 2017-02-06, CTV
  16. Paige’s Story Prompts Representative to Call For New Approach to Helping Vulnerable Aboriginal Girls – Office of the Representative for Children and Youth, 2014-05-14
  17. Dead boy’s dad says he’ll push for services for kids before B.C. election – Camille Bains, 2016-10-21, Vancouver Sun
  18. Kamloops ‘Wrap Force’ Fights Youth Homelessness – Katie Hyslop, 2017-01-18, TheTyee.ca
  19. B.C. minister, representative disagree on ‘aging out’ fixes – Tracy Sherlock and Lori Culbert, 01 JAN 2016, Vancouver Sun
  20. Rcy-pg-report-final.pdf – Paige’s Story – Abuse, Indifference And A Young Life Discarded – B.C. Representative For Children and Youth, May 2015,
  21. Near Daily, a Child Dies or Is Hurt in Care of Province – Pieta Wooley, 2013-03-11, TheTyee.ca

 

 

CHILDREN HURT, DYING IN THE “CARE” OF THE POLITICIANS AND IS FOSTER CARE THE NEW RESIDENTIAL SCHOOLS

“Children are entitled to be protected from abuse, neglect and harm or threat of harm.” (1)

This isn’t about privacy but it is about the children. And I want to help raise awareness about how they are being treated by the government.

There has been “a number of very tragic incidents in a relatively short period of time”; (2) – Alex Gervais (3), Nick Lang (4), Carly Fraser (5), Danny Francis (6), Paige Gauchier (7)(8), Alex Malamalatabua (9)(10), and Isabella Weins (11), and others (11) (12).  You may have to go directly to the Times Colonist and Vancouver Sun’s websites to access their articles.  Also, I encourage you to read Paige’s Story, a report by the Representative’s office about “abuse, indifference and a young life discarded”. (7)(8)   “It is a startling example of a collective failure to act by multiple organizations and individuals who should have helped Paige” (7) and Ministry abused authority in case of B.C. father sexually abusing his children:  judge, Eric Rankin and Tamara Baluja, 14 Jul 2015, CBC News (JP case – “This is the very first case in Canadian history where a mother has succeeded in holding a child protection agency liable for misfeasance in public office,” Hittrich said)

In the case of Alex Gervais, 23 youth homes, with 33 children, were abruptly closed down when the Representative’s office “brought these concerns to the ministry’s director of child welfare after receiving calls from some of the young people in care”. (3) “Part of the documents also included a review of caregiver concerns from 2008 to 2014 which revealed “several ongoing themes” with caregivers including the following allegations:  Using substances, criminal offenses, inappropriate physical discipline, assault of a teen in care, viewing pornography, domestic violence between caregivers;” (3)  And concerns about unsafe living conditions that included “improper issuing of medications, a caregiver carrying a weapon, and exposure to abusive language”. (16) (43)

“Turpel-Lafond said senior ministry staff told her directly that none of the 33 displaced youth from several group homes would be moved to hotels”. (2) (Mary Ellen Turpel-Lafond, was B.C. Representative for Children and Youth)  Yet Alex Gervais was placed in a hotel with minimal supervision for 49 days, until his death. (13) The number of days Alex was in the hotel varied in reports from three to five months so it appears, initially, no one knew how long he had even been there. (2)  This hotel placement was in contravention of Ministry policy. (14)

It also became apparent that B.C. Minister of Children and Family Development Stephanie Cadieux has little or no idea what goes on in the Ministry. “She said both she and the provincial director were under the impression that no youths were being housed in hotels when Gervais died.” (15) (bolding mine)  “B.C.’s children’s minister has ordered an immediate review to determine whether there are more foster kids in hotels that senior officials don’t know about, one day after The Vancouver Sun reported a youth in foster care was living in a hotel and died when he fell out a window”. (16)
“In September, Cadieux told The Sun that 23 foster youth had been placed in hotels in the previous year”. (17)(43)  “the ministry was wrong again. In fact, 117 kids — five times its original estimate — stayed in hotels between November 2014 and October 2015”. (18)   “In fact, because some children were placed more than once in a hotel during this time frame, the total number of hotel stays was 131”. (18)  “She had no explanation Wednesday when asked why the initial number was so inaccurate”. (19)  “She later claimed it was because the information had not been properly tracked”. (20)  “NDP leader John Horgan issued a statement that accused the provincial Liberals of purposely hiding the true number of vulnerable youth they stuck in hotels, until forced to reveal the truth by Turpel-Lafond”. (18)      “According to the new report, the ministry’s ‘expectation’ is that care workers would provide constant supervision for a child during these hotel stays as well as provide opportunities to participate in recreational activities. (18) (bolding mine)

“The minister in particular and the senior ministry staff did not have a strong handle on what was going on with the residential placements of vulnerable youth in care.” (17) (29)   “Representative Mary Ellen Turpel-Lafond said it took time to have ‘difficult discussions’ with the ministry, but she is glad to be working together now to find solutions”. (17)  “It required them to make a pretty frank admission that things were not operating appropriately,” she said in an interview. (17)        So Turpel-Lafond and Cadieux prepared a joint special report. (21)   Then, “Cadieux disagreed with one of its findings, that the use of hotels reflects ‘significant shortfalls’ in other available placements, including foster homes, emergency beds and group homes” (apparently she didn’t read the report before she signed off on it). (13)  She said it was just a communications problem because beds are available. (13)  Then she changed her message again and said “Our ultimate goal is to eliminate hotel placements entirely. Government can’t do that alone however and we need more people to step up, get trained and work with us to provide kids in care with the stable homes they so desperately need and deserve”. (22)  So, apparently it isn’t a communications problem but a lack of foster parents problem.  I suspect she has set-up a scapegoat (blame the people) in case the Ministry gets caught again placing children in hotels.  You just can’t trust a politician.

Apparently, Manitoba worked over a two-year period to abolish the use of hotels for children in care by adding 55 emergency shelter beds and 114 emergency foster beds, or so they say. (19) I’m not aware this has been proven.

Cadieux said her responsibility is to set “’high level direction’ for the ministry” (as given to her by Premier Christy and her handful of people running the government – see Why I Don’t Vote – Part II), and to speak about anything that goes wrong (15), which I guess would be saying the scripted talking points she’s given.  And, of course, going for photo-ops.  “But as a minister of the Crown, she is responsible for everything her ministry does within its charter.  By attempting to evade this longstanding principle, she makes a mockery of ministerial accountability”. (23)  Can you imagine the CEO of a company saying “I had the directions written for the company to follow and I have no other responsibility as to the operation of the company.  How long do you think she/he would be employed?  Do you think parents can say they did their job by directing the writing of policies for their children to follow, but they are not responsible for whether their children follow those policies.  The Premier/Minister can delegate but it is still the Premier/Minister’s responsibility to ensure that the delegates are doing their work appropriately.

Plecas report (24)

Cadieux hired Plecas, and his team, to do a review of the J.P. Case and offer recommendations.  His review is a review of the system.  Plecas refers to it as an “independent” review but it is not.   When reading the report one has to keep in mind that  Plecas’s career was in the government (see Plecas Review, Appendix 2), and he is an  “insider” (25).  Also, coincidentally (I think not), his daughter Bobbi Plecas was moved to the Office of the Premier on July 30, 2015 just before her father was hired in August 2015. (25)(26)

He provides, what appears to be, a good summary of the Ministry’s roller-coast ride due to continual changes in direction by Deputy Minister’s. The Representative said “I was pleased to see that Mr. Plecas’s document endorses recommendations that my Office has made continually in recent years – including those calling for more funding and adequate staffing for MCFD”. (27)

However, his toadiness or bias can be seen in some of his recommendations. For example:

  1. Case-specific

“The Ministry for Children and Families said Tuesday that the review of Gervais’ death, conducted by the provincial director of child welfare, would be case-specific and not a look at systemic issues in the child welfare system”. (28) Plecas also recommended “that these cases be looked at as case-specific and not be applied universally”. (24)  If they did a very narrow review would they have noticed (much less reported):

– that the problems at these group homes had been going on for 6 years (2008 to 2014) and no one in the ministry did anything (presumably children and case workers passed this information up the chain of command) until the children went to the Representative. (3)

– what effect did this have on the other children living in these unhealthy (physically and emotionally) group homes; this was not addressed in any of the articles.

– that 117 (133 with repeat stays) children were being warehoused in hotels, with minimal supervision, contrary to policy.

– would they have noticed the Minister and senior staff had so little awareness of what was happening in the Ministry

– and would they have noticed all the larger issues, including other “gaps” in the system that even BC premier Clark had to admit existed. (28)

Looking at the specifics of the case, and not seeing if it extends to the rest of the system, is just a way of covering up management failures. It also prevents any improvements.

  1. Blame

Plecas says that no one should be laying blame until all the facts have come out. To a point I believe this is true.  Cadieux “pointed the finger at ministry staff “(15) and Clark blamed the agency (30).  But ultimately Clark and Cadieux are responsible for whatever happens in the Ministry.

Yet, Plecas wants to share victim’s (children’s) sensitive personal information with politicians so they can have a debate based on “facts”. This sounds like victim blaming.  And, let’s face it, the politicians do not have constructive debates in the Legislature.  They may have been given a briefing and questions to ask/answer.  They are not allowed to stray from their talking points.  In fact, the Legislature debate has become such a farce that even the politicians are reducing the number of days they “sit”.  And, how would sharing Alex Gervais’ personal information have made a difference; it was not about his vulnerabilities but about multiple system failures. The Ministry takes in children because they are vulnerable.  It is the Ministry’s job, not just to provide housing, but to provide the resources to heal these children’s vulnerabilities so they will leave the government care physically and mentally strong.  If a child leaves the system vulnerable or dies due to vulnerabilities this is not the child’s fault; the Ministry failed because the child is still vulnerable.

I do agree that calling for the resignation of the minister (Cadieux) isn’t constructive. After all, one useless, putrid politician will simply be replaced with another useless, putrid politician and nothing will have changed for the better.

  1. Mary Ellen Turpel-Lafond

Plecas wants to get rid of the Representative’s oversight function and he would like to do it next year (2017) when her current contract expires.   I totally disagree with this.  But I am not surprised that the government would want to get rid of her.  I’m only surprised she has lasted as long as she has.  As Plecas admits “she’s a thorn in their side and she’s suppose to be”. (24)(31)  The politicians don’t like their “mistakes” brought to light regardless of the effect on the children.  So, the problems with eliminating the Representative’s oversight function are:

  1. The politicians cannot be trusted

The politicians would much prefer to cover-up all critical injuries and deaths which show government mismanagement. For example, all the contradictory statements by Cadieux, plus her refusal to accept responsibility.  Another example, “Agreements with Young Adults (AYA) a smokescreen that is not helping these vulnerable teens”.(32)                                                            Cadieux said the Ministry has “the fewest children in care in the past 19 years” (31) but the question is why.  Is this because the children are not in danger or because the government is leaving children in family, or other, situations that are not safe?  Are they “delegating” the children to other organizations so the politicians can claim the children are no longer in “government” care?

With regard to the group homes in the Alex Gervais case, the appalling situation went on for 6 years with nothing being done until the Representative stepped in.

Cadieux also said there were 110 more social workers this year (31) but the Representative stated “that over the same time period 91 social workers quit for various reasons, including burnout, leaving just 19 new workers”. (31) So, Cadieux was trying to mislead people.

The hospital reviewed the Malamalatabua case but won’t share the report with Turpel-Lafond, citing privacy laws, saying doctors won’t speak openly in the future if they think internal reviews are shared with her office. (10)  Why?  What are they hiding?  Would they give this information to the police if the police were conducting an investigation?  I think there needs to be discussion as to what can be shared and under what circumstances regarding the children’s injuries and deaths.

  1. Plecas assumes the quality assurance program and public information system will be implemented and successful.

I find it “odd” the Plecas would suggest that everything will be fixed, and the Representative’s oversight function redundant, possibly as soon as 2017 when he stated “but twenty years after its formation the Ministry continues to struggle, not equipped for this century, and in need of repair. There clearly remains a fair distance to go”.

  1. Plecas assumes the politicians won’t decide to change things shortly after the Representative loses the oversight function.

Yet, as Mr. Plecas pointed out in his report, the politicians have a penchant for changing direction on a dime.

  1. Does anyone really think the politicians won’t try to cover-up any wrong-doings or prevent any bad publicity?

Which means the children will suffer in silence.

 

  1. Lack of Enforcement of the Child, Family and Community Service Act (CFCS Act)

“In her report Lost in the Shadows, the Representative called for the Attorney General to review the reasons for a lack of enforcement of the CFCS Act in B.C., and take steps to promote compliance, if necessary. The Representative fails to understand what action was taken at the level of the Attorney General as there has been no direct follow up on this issue since that report was issued on Feb. 6, 2014”. (8)  It again sounds like the Act is just words on paper to the politicians.

By having Turpel-Lafond, or someone of her calibre, with the current responsibilities, what could happen:

  1. If the Ministry is doing its job effectively, protecting the children, then the Representative won’t have any investigations and few recommendations.
  2. With less work, the Representative’s office could focus on other duties like advocacy.
  3. If the government starts screwing up again, the Representative would still have the mandate to do the appropriate investigation(s).
  4. The people can have some trust in the protection of the children in government care because of the oversight role of a Representative of the calibre of Turpel-Lafond.
  5. Turpel-Lafond not only exposes the mismanagement of the Ministry but provides recommendations to improve the system (help the children)

If you read any reports by the Representative’s office you will see the incredible, beneficial impact she has had on improving the care of the children but there is still lots to do.   You may also want to read “Meet the Representative” on the Office Representative for Children and Youth website which explains why she is so good at her job.

Plecas wants, instead, a ministry spokesperson “to ensure the public is informed not only of the Ministry failures but also of its successes”. Do you really think the government is going to allow one of its toady’s to advertise its failures?  If we had transparency all the time a spokesperson wouldn’t be necessary because the people would know what the ministry has been doing and the pros/cons.  This sounds like it would just be a propaganda exercise by the government.  And this would presumably “shield” the Minister and provide her/him with one less thing to do.

Al Hoolaeff, Alex Gervais’s former primary caregiver at an Abbotsford group home, “said he’d prefer for Turpel-Lafond’s office to operate at further remove from the government — more like the Independent Investigations Office of B.C., which probes incidents involving police that lead to death or injury”. (34) “It’s important that these things are investigated immediately and that any of the ministry files need to be seized immediately — just like if it was a police investigation — where they can’t be tampered with, can’t be edited,” Hoolaeff said. (34)

Plecas wants new appointees to the Representative’s position to serve only one term of six years. If they are doing a good job, or an incredible job like Turpel-Lafond, why would you replace them?  A new person would have to learn the job, learn the issues, and probably won’t see if their recommendations are implemented.  This constant turnover of personnel is part of the problem as Plecas himself pointed out in the history of the Ministry.  But perhaps if the Representative’s are good little toadies they can get another job in government after six years.

Turpel-Lafond is asking for an increase of $20 million per year. “Earlier in the day, Mary Ellen Turpel-Lafond, the representative for children and youth, urged the minister to spend $20 million more annually to hire 250 more staff, 200 of them social workers. She made the comments after releasing a report that said some B.C. child welfare offices are perilously understaffed, leading to a consistent failure to meet the provincial government’s own timelines and rules for child protection”. (35)(33)  Two editorials by the Times Colonist explain why this is needed (13, 31), plus a CBC News article (35), and Paige’s story (8); for example, front-line workers are grossly over-burdened (33) and children are being left at risk. (33) (7)  “I find it particularly concerning that, over the past four years, the proportion of MCFD’s budget that is dedicated to child protection has actually decreased in real terms, leaving alone the impacts of inflation”. (24)  “When government steps in to act as a child’s guardian and protector, it also takes on a financial burden associated with its decision”. (24)  Plus “NDP critic Doug Donaldson said the report shows, though, that the ministry under-spends its child protection budget by millions every year”. (33)  Presumably, this “savings” goes back to the politicians for other uses.

The politicians can “afford” large subsidies to the LNG companies (36), Christy’s $500,000 private jets (not including other forms of transportation such as commercial flights)(37), and hiring Christy’s “inconvenience”, Ben Stewart, to go for a prolonged stay to Asia (see Why I Don’t Vote – 4c), all on the backs of the children. The politicians could take some of that money for the children, AND/OR, they could take the $100 million Christy transferred into the prosperity fund (which is not linked to LNG revenues) and use it for the next five+ years for the children.  After all, finance minister Mike De Jong said, about transferring money into the prosperity fund, “The fact that we would take a small amount of the chequing account and transfer it into a small savings account to look ahead is a natural thing for us to do”. (38)  Well, lets look ahead and transfer it to the children.  After all, it’s just a small amount.  But, conning the people into believing LNG money has gone into the prosperity fund, for the benefit of Christy’s next election campaign, is more important than the children.

The issue is not about having the money but how it is allocated. But then, the children don’t vote, they don’t contribute to the political party fund, they don’t give out brown bags of money and they can’t hire out-of-work politicians.  The children have no value – to the politicians.

And just giving money isn’t enough. Hiring more front-line social workers isn’t enough.  You have to have systems in place to show that the money is being used effectively and efficiently.  For example, in a 2013 report, the Representative “said the province provides about $90-million a year to 23 delegated aboriginal agencies but that there has been no comprehensive assessment of how they are performing and whether they are improving outcomes”. (9)  I am also curious as to why 23 group homes were closed which affected 33 children.  Was there on average of 1.5 children per group home?

Unlike LNG, money spent on the children has a known, direct return. Studies, reports and just common sense tells us that children, most or all, that are returned to health, physically and mentally, go on to lead healthy, productive and, I suggest, mostly happy lives.  They contribute to society in a variety of ways and reduce costs in hospital, welfare, shelters, police, courts and other services. (32)   And, in many cases, these healthy children, as reported by the Representative, will raise healthy children breaking an intergenerational cycle of trauma. (8)  The returns on healthy children just keep happening, year after year, generation after generation.

Plus, the Representative says her office “needs an extra $656,000 to handle the increasing number of investigations into child injuries and deaths”. (31) “The need to do more detailed probes, she said, is the result of an ‘astronomical’ rise in the numbers of deaths and critical injuries reported to her office. She received 82 such reports this September, compared to just 28 during the same month in 2014”. (10)  “The main reason for this increase was that her office re-defined what constitutes the critical injury of a child, prompting government social workers to report more cases”. (10)  I’m sure this was necessary or the politicians would not have allowed the change in definition.   “In addition, she’s asking for $958,000 a year to boost advocacy on behalf of children and youth seeking a permanent home”. (31)  However, her budget has been frozen at $8.18 million for four years”. (34)(10)  The safety and well-being of children are the paramount considerations and these are not, relatively speaking, large sums of money.  After all, if $100 million is a small amount, then $1.6 million is miniscule. (38)

Some people are suggesting that foster care may be the new residential schools. (39) This refers to the seizure and treatment of aboriginal children.  However, what should not be ignored is this also includes the treatment of all children (aboriginal and non-aboriginal children).  Some children have, relatively speaking, positive experiences in foster care (as I have read, some did in residential schools); by that I mean they were not beaten/starved/ molested/emotionally abused, etc. while in residential school/foster care.  But many others cannot say the same.  And, can you imagine saying to your child (and the government is the parent of the children in foster care), happy 19th birthday, as you hand them garbage bags containing their belongings, and show them the door (the permanently closed door). (8)

If foster care is the modern day version of residential schools then, at least, we know where to start laying the blame, the self-serving politicians – BC Premier Christy Clark, BC Minister Stephanie Cadieux, Manitoba Premier Greg Selinger (40), Minister Kerri Irvin-Ross (see Why I Don’t Vote – Part II) and those who came before them. I think of these people as the monsters because they abuse and kill children through their indifference, their greed, and their narcissism.

The Union of BC Indian Chiefs (41) and The BC Federation of Teachers (42) are speaking up and demanding better care of the children. I can only hope the rest of the people of B.C. stand up for the children (and other provinces/territories), and, at the very least, demand more money for necessary resources, demand a better system that cares for them, demand that the Representative’s office retain its current mandate and the position of Representative be held by Mary Ellen Turpel-Lafond or someone of her calibre (not some government toady).  “Health’s  budget is protected because both of BC’s political parties know this is essential for electoral success”.(24); people need to make sure that the children’s budget is protected and not decreased in real terms, unless it can be honestly justified.  These are CHILDREN.

 

  1. When Foster Care Hurts – Pieta Wooley, 5 Jul 2013, TheTyee.ca
  2. Teen in B.C. provincial care dies in fall from hotel window – 23 Sep 2015, CBC News
  3. B.C. youth care home investigation finds unsafe conditions – Enza Uda, 08 Dec 2015, CBC News
  4. Nick Lang’s grieving parents say B.C. ministry worker ‘didn’t care’ about meth-addicted teenager – Natalie Clancy, 13 Oct 2015, CBC News
  5. Mother denied details about daughter’s case – Les Leyne, 11 Nov 2015, Times Colonist
  6. Danny Francis takes own life while in ministry care, friend says – Natalie Clancy, 03 Dec 2015, CBC News
  7. Rcy news release pg final.pdf – Paige’s Story Prompts Representative To Call For New Approach To Helping Vulnerable Aboriginal Girls – 14 May 2014, B.C. Representative For Children And Youth (News Release), BC Representative For Children and Youth website.
  8. Rcy-pg-report-final.pdf – Paige’s Story – Abuse, Indifference And A Young Life Discarded, May 2015, B.C. Representative For Children and Youth (see website)
  9. Young man dies while in care of B.C. aboriginal agency – Wendy Stueck, 03 Dec 2013, The Globe and Mail
  10. Children’s advocate wants more money to investigate youth deaths, Lori Culbert and Rob Shaw, 20 Nov 2015, Vancouver Sun (a paper I wouldn’t buy)
  11. Mother sues B.C. Ministry of Children after baby dies in foster care – Chantelle Bellerichard, 24 Mar 2015, CBC News
  12. Near Daily, a Child Dies or Is Hurt in Care of Province – Pieta Wooley, 11 Mar 2013, TheTyee.ca
  13. Editorial: Child ministry needs overhaul – 22 Jan 2016, Times Colonist
  14. Stephanie Cadieux says answers coming in death of Danny Francis, other teens – 04 Dec 2015, CBC News
  15. Teen’s death leaves Minister Stephanie Cadieux ‘angry’ policy ignored – 24 Sep 2015, CBC News
  16. B.C. children’s minister orders urgent review to see if other kids in care are stuck in hotels – Rob Shaw and Lori Culbert, 23 Sep 2015, Vancouver Sun
  17. B.C. government agencies to review foster children in hotels – Lori Culbert, 10 Nov 2015, Vancouver Sun
  18. New report shows 117 B.C. foster children were placed in hotels – Lori Culbert, 13 Jan 2016, Vancouver Sun (a paper I wouldn’t buy)
  19. 117 vulnerable youth placed in hotels, ministry says – Lindsay Kines, 13 Jan 2016, Times Colonist
  20. B.C. commits to public reports on teens placed in hotels after joint review – The Canadian Press, 13 Jan 2016, Times Colonist
  21. The Placement of Children and Youth in Care in Hotels in British Columbia – A Joint Special Report, Representative For Children And Youth, Ministry of Children and Family Development, January 2016
  22. News Release – Joint report results in action plan to reduce hotel stays as placements – 13 Jan 2016, Ministry of Children and Family Development, Representative for Children and Youth
  23. Editorial: Minister must be responsible – 05 Oct 2015, Times Colonist [please note, paragraph 5, I believe there was an entry error and “Cadieux’ death” should be “Gervais’ death”]
  24. Plecas Review, Part One: Decision Time – A review of policy, practice and legislation of child welfare in BC in relation to a judicial decision in the J.P. Case – Bob Plecas, 04 Dec 2015 (you can do an internet search or go to the Ministry of Children and Development/Ministry Reporting/Plecas Review which was on the right hand side, or go to the website and do a search)
  25. Bob Plecas is a Friend of Mine – Vaughn Palmer (updated) Bcveritas.com/index.php/2015/07 (a blog by Vaughn Palmer)
  26. B.C. cabinet shuffle puts Fassbender in Victoria amalgamation talks – 30 Jul 2015, Times Colonist
  27. representative statement-dec 14.pdf – 14 Dec 2015, B.C. Representative For Children and Youth (see website)
  28. Aboriginal agency wants broader scope for review of B.C. teen’s death – Lori Culbert and Rob Shaw, 01 Oct 2015, Vancouver Sun
  29. Dozens of foster children lodged in hotels over year – Vancouver Sun, 26 Sep 2015, Times Colonist
  30. Death of Alex Gervais sign ministry needs to reorganize, says critic – 29 Sep 2015, CBC News
  31. Editorial: Work together for the children – 21 Nov 2015, Times Colonist
  32. B.C. minister, representative disagree on ‘aging out’ fixes – Tracy Sherlock and Lori Culbert, 01 Jan 2016, Vancouver Sun
  33. Two few social workers, too many at-risk kids – Lori Culbert and Rob Shaw, 09 Oct 2015, Vancouver Sun (a paper I wouldn’t buy)
  34. Child welfare report leaves former caregiver with little hope – Bethany Lindsay, 15 Dec 2015, Vancouver Sun
  35. B.C. child protection service unsafe and in crisis: report – 08 Oct 2015, CBC News
  36. Three Wacky Accounting Numbers for LNG and Shale Gas – Andrew Nikiforuk, 29 Feb 2016, TheTyee.ca
  37. Air Christy Climbs to Half Million Dollar Mark – Bob Mackin, 25 Feb 2016, TheTyee.ca
  38. B.C. LNG prosperity fund to get $100 million, but not from LNG – 15 Feb 2016, CBC News
  39. Aboriginal Children and Child Welfare Policies – Stephanie Laskowski, 07 Jul 2014, LawNow Magazine
  40. Lack of foster spots keep Manitoba kids in jail, watchdog says – Chinta Puxley, 14 Apr 2015, The Globe and Mail
  41. Open Letter: Plecas Review Must be Withdrawn and RCY Recommendations Fully Implemented – Union of BC Indian Chiefs, 17 Dec 2015, First Nations Drum
  42. BCTF calls for children’s minister to resign after latest teen death – Tracy Sherlock, 16 Mar 2016, Vancouver Sun

 

 

 

 

 

  1. Drug use, caregivers with criminal histories in B.C. youth group homes, report alleges – Bethany Lindsay, 08 Dec 2015, Vancouver Sun (a paper I wouldn’t buy)

 

 

 

COLLECTING MEDICAL INFORMATION (OR NOT) – MY STORY

I started to get copies of my medical information that I didn’t already have.

(1). My primary doctor’s office first demanded to know why I wanted a copy of my records.  I told them “because I want them”.  I didn’t feel I needed to provide an explanation; a reasonable office employee told the other to just give them to me.  But the other one said that I would have to talk to the office manager, who wasn’t in the office.  I finally contacted her and she said some of the records might be stored in the back and they would have a hard time getting them.  I asked for them anyways.  In fact, if she had checked the computer she would have known that I had started seeing the doctor after they started computerizing their records.  But some doctors do all they can to avoid giving out copies of records to patients.

Then she demanded to know why I wanted the records. She said there were different prices depending on whether they were for me or for my lawyer.  I asked what the difference in price was and she refused to tell me.  Is it legal to charge different prices for the same thing (assuming she was telling the truth)?   And are they legally allowed to refuse to give me a copy of my information unless I tell them why I want it?  Are they legally allowed to do everything they can to discourage me from getting a copy of my records?  Oh yes this is the medical business who don’t seem to care about the law, unless it suits them.

All my information was, if fact, in their computer. My primary doctor charged $27 and as the office manager said, they just printed it off the computer; is this expensive paper, another way to discourage people from getting their records or just a money grab?  My medical records were put in an envelope, unsealed, and left at the front desk for a few days;  Staff and patients are all round the desk.  Another middle finger given to privacy.

I was delayed picking up the envelope because I wanted to pick up this information and the “d”’s at the same time. Of course, I had expected the envelope to be sealed.

(2) The first surgeon I had seen refused to give me a copy of the information that had been collected.

(3) No problem with my surgeon. I just had to go in and sign off at the desk that I had received the copies which was fine.  Except that there had been communication between the surgeon and the “d’.  The surgeon wasn’t sure the information could be released without the other doctor’s approval so he didn’t give it to me (he could have just phoned the “d”).

(4) I phoned the “d”s office and asked for a copy of my medical records and if he gave my information to the registry.  I had asked my primary doctor and surgeon but neither of them knew who gave my information to the registry (or so they said).  At the “d”s office I was told that I had to make an appointment to get this information.  Now you know where some your tax dollars get wasted.  As I am entitled to a copy of my medical records I made an appointment.  When I went into his office he started taking the conversation in a different direction so I stated, again, that I just wanted my medical records and to know if he gave my information to the registry.  Again he took the conversation in different directions, probably trying to justify the visit, but when I wouldn’t play ball, he finally said essentially “So, you just want a copy of your medical records and to know if I gave your information to the registry.”  He said he didn’t have any records so apparently there was no record of my first visit or the so-called checkup.  He also said that he hadn’t given my information to the registry but he mentioned who might have.  Also, when I mentioned the communication between him and my surgeon I got the same response as my surgeon.  Now these are two people who, based on age, have been in the business for a lot of years and I would think would have encountered this before and so should know whether they could share the information or not.  In any case, he said he would check with the other doctor and get back to me.  Of course, being the medical system, he never did.  He just LIED.  It would have been interesting to find out what they were hiding.  I walked out of his office in absolute disgust, AGAIN.

I also wrote letters to the hospital and anyone else involved in my health care, requesting copies of my files. And I wrote to the appropriate organizations with questions (this included treatment in the new province).  I did not receive a response to several letters, so I mailed another copy, after a few more months and no answer, I sent the letters by registered mail.  I got answers.  Now it is possible that ONE letter got overlooked but when it happens to several letters and to different people/organizations, in the same business, it begins to look like a tactic.

Some answers I received to my questions made sense in relation to my direct health care. Others did not (I do not include those mentioned in other posts).  These are some of the non-answers from William Findlay, Michele Stanton and John Garratt:

  1. What are your living arrangements? They said that they want to know if someone will be at home when you get out of surgery. So, why don’t they ask “will someone be at home to care for you when you leave the hospital”?  You may be living with someone but that doesn’t mean that, for a variety of reasons, they will be there when you get home.  You may live alone but that does not mean you will not have someone at home when you leave the hospital?  The non-answer I got from Findlay was “yes, that is a broad question”, which means they will continue to ask the questions for reasons they refuse to state.
  2. I asked who sent my information to the registry? I was told it was nobody specific; it’s just entered from a variety of sources at the hospital. And researchers have access to this information.  My surgeon said researchers would only have access if I went for further treatment which I didn’t.  The “d” said they were only counting a number.  Now, I am being told that the registry staff and “researchers” have access to my information (no limits mentioned). You just can’t get an honest answer from these disgusting “people”.

I asked William Findlay how much of my information was put in the registry. He refused to answer and referred me to the organization that owns the agency that has the registry.  That organization refused to answer my question.  I sent letters again to the organization and to Findlay insisting on an answer since it was the hospital sharing my information.  Findlay’s secretary said, in essence, that they refused to answer the question.  I got no response from the organization.  I sent a letter to the agency and they refused to answer my questions.

I have to assume that all my information/body parts is being shared/traded/bartered with all their unsavoury friends (the only kind who steal from the vulnerable/sick people) until I hear otherwise and, so far, no one will tell me; I just get the run-around. Obviously, these vultures have something truly horrendous and very evil to hide.

  1. I asked if my DNA was shared with researchers and I provided my care card number so they could look at my file. All I got was a non-answer that researchers may access the registry. So, I can only assume that researchers have access to my DNA for their use.  Just think they could clone me (like they have done to sheep, etc.) and then throw darts at me and otherwise torture me.  Anything is possible until the truth is known.
  2. I asked if researchers, biotech companies, etc. are allowed to patent my DNA. Again they had my care card number to check my file. Again, I just got the non-answer “This is very uncommon.  Should you wish to have your DNA patented you should contact your family doctor about that”. I guess he thought that was pretty funny.  So, although I gave him my personal health number (PHN) he could not/would not tell me if my DNA was, or could be, patented without my knowledge/consent.  So I can only assume that “researchers” can do whatever they want with my DNA.
  3. I was also told that when I was admitted to the hospital I signed an admission form basically giving them permission to do whatever they want. I checked my copy of forms from the hospital and did not find an admission form. I asked William Findlay, in two separate letters, to send me a copy of the signed admission form. The question was continually ignored and I have not received a copy of the form so I have to assume that it does not exist.  But, if it did exist it would only have been manufactured consent versus real consent.  Real consent is explaining exactly how they want to use information, especially in ways that are not directly connected with my specific care, with whom they want to share the information and requesting my consent (it implies respect for the patient). Manufactured consent implies contempt for the patient — Give us everything we want or die, we don’t care, we are the medical business.

Update: I found a consent form in with the copies from my surgeon.  When asked to sign the form I said that I didn’t agree with some of the “requests”.  I was told to just stroke out anything I didn’t like, which I did.  I don’t know if this is the hospital consent form but I suspect it is.  It may be why they refuse to send me a copy because I stroked out everything that was not directly related to my surgery, such as no sharing of information or body parts, etc.  But they probably just stole the information/body parts anyways.

William Findlay said that the confidentiality and security of my information was protected under the privacy act. Isn’t that disgusting.  My information is protected under the privacy act.  Let’s see, oh yes, the auditor general and the privacy commissioner have found, on several occasions, that the privacy act has not been implemented, much less enforced in the medical business.  They found that our information was/is being shared with every low-life.  But my information is protected under the privacy act.  How?  Oh yes, and when the medical business is caught illegally sharing patient information NOTHING happens.  The management is not sued, fired or held accountable in any way.  They just promise to change things, until they get caught again.  And then they just make the same lying promise.  But my information is protected under the privacy act.  The privacy act was meant to be, and is, just words on paper to be used to misdirect and con the public.  But my information is protected under the privacy act.  What a vile farce.

One medical person, when asked for specific information, about who my information was being shared with, told me, essentially, that if I didn’t like his (general) information I could contact the privacy commissioner.  I contacted the privacy commissioner who told me that such requests were outside their mandate.  But that’s what they do, run you in circles.

I had to laugh at the arrogance/narcissism of one medical person who said that I had his assurance that my information was protected. Obviously, he was still under the illusion that the word of someone in the medical business had value, that he could be trusted.  I wish that were true but it isn’t.

As for that registry, well, I tell people I wouldn’t give that organization my spit. But then they have probably STOLEN that too.

I received a letter from the staff of a doctor telling me that the doctor would like me to phone as the doctor had something to say to me. I asked that the information be sent in a letter.  I never heard from the doctor/staff again.

If I could trust the medical/government business I wouldn’t have to ask the questions. But they have proven they are not trustworthy.  And, if they were trustworthy, I would have gotten honest, complete answers, not non-answers, run-arounds or just blatant LIES.

So, now they have all this information on me, the truth and the lies. It will be shared with every scumbag because, in my opinion, that’s the only type that would access a patient’s information without their knowledge and/or their real consent.  Collecting information “anonymously” has been proven too many times to be another lie.

Again, I state, I am not against research, if done with respect. I am against stealing people’s information because only unethical, immoral fiends would do this.  If you can’t ask for information honestly, if you refuse to state who is using this information and for what purpose, if you have to hide in the shadows, in the gutters, then you must be doing something corrupt, vile and contemptible.

From the Open Society Justice Initiative, printed by the Office of the BC Information and Privacy Commissioner, Right to Know Week, September 28th to October 5th, 2007,:

10 Principles that form the core of the right to know:

  1. Access to information is a right of everyone.
  2. Access is the rule – secrecy is the exception!
  3. The right applies to all public bodies.
  4. Making requests should be simple, speedy, and free.
  5. Officials have a duty to assist requestors.
  6. Refusals must be justified.
  7. The public interest takes precedence over secrecy.
  8. Everyone has the right to appeal an adverse decision.
  9. Public bodies should proactively publish core information.
  10. The right should be guaranteed by an independent body.

Just words on paper. Sounds good but not worth a damn because the medical/government business will not implement it.  But the privacy commissioner’s office likes to print it because it makes them look like they care.  Just propaganda by the government.

Simply put, privacy refers to an individual’s right to remain anonymous or control who, how, when, and where information that is used to identify them is managed. (source unknown). And we have a RIGHT to privacy, this is our information not theirs but these people flip their middle finger at our RIGHTS.

I still have to see medical “people” periodically, whether for healthcare or outside the medical business. But I don’t have to like them, I certainly don’t respect or trust them.  I look at these cannibalistic cowards who feed off the patients, whether it’s a pharmacist/technician/researcher/physician, etc. (with one or two individual exceptions) with the same disgust and contempt that they have for the patients.  The difference is — I don’t mask it.

FOLLOW THE MONEY

Where does the money go when you contribute to research? Do we pay for the research and then pharmaceutical companies make billions in profits selling it back to us so we pay two or more times.

If you don’t care about your privacy, maybe you care about your money. You pay for health care, your information is then sold/traded/bartered, the politicians then give researchers taxpayer money to do research, and people donate money for research.  The research is done and then the people pay again for the resulting pharmaceuticals or patent testing.  How many times have you paid for the pharmaceuticals and tests you may, or may not, use?

I have read the websites, and reviewed the financial statements of several health foundations/societies/agencies. They put on the website some information which is useful to people with that particular illness.  But I also noticed that 23%-53% of the money raised went to fundraising costs, even with volunteers.  There are no details as to how the money is actually spent.  Does it all go primarily to one fundraiser, are there connections to the foundation/society/agency personnel, or are the costs spread among a lot of different people/companies, and are the costs justified?  Who are the fundraising people/companies and are they affiliated with the politicians.  The fundraising costs amount, in some cases, in just one society/foundation to hundreds of thousands of dollars, annually.

The websites say that they give x dollars to researchers and sometimes they name the researchers or research being done. But they don’t account for the money or the research.  Is the money just to pay wages and, if so, what are the wages of the researchers?  Do the researchers have funding from somewhere else?  Could they be double- or triple-dipping?  How else is the money being spent and is it being spent wisely?  We don’t know because there is no information.

The websites also don’t tell you what happens with the research. Was the money spent on research that was successful?  How much did it cost to find a cure or something that aids a sick person?  Again, was this money spent wisely?  What happened to the successful research – was it then patented?  If so, who gets the money and how much does the patient/taxpayers have to pay, again, for the results of this research?  Even if the research was unsuccessful, was the money spent wisely?  Could the money have been better spent aiding sick people in some other way?  The BC Cancer Agency website says that they have “set up the Technology Development Office to champion its intellectual property management (presumably that means “market” its, not the people’s, intellectual property) and commercialization.  They also say that they “partner closely with research institutions, non-profit organizations, and industry around the world to help drive new discoveries forward quickly” and they have a “duty to act on behalf of our patients and the general public to ensure that a culture of accountability is fostered”.  Are yet they won’t say specifically who they are sharing our information with and under what circumstances so where does the accountability come or is it just lies?  The Liver Foundation provides minimal financial information but does say you can contact them to get the details.  I contacted them, several times, and never got a response.

I am upfront about the fact that I don’t contribute to these organizations (at least not willingly). When they provide me with enough information that I know my money is being wisely used for the benefit of sick people, and not to line someone’s pocket, I will contribute.  Needless to say, I would also want assurance that the research wasn’t using stolen information and being given to pharmaceutical/research organizations with a unethical/criminal history (4, 5, 6).

I heard, some time ago, that there is medical research that would benefit patients but that it is not being done because it can’t be patented. I doubt that things have changed.  Gawd forbid that we would pay for research and then have a medical benefit that would cost the patients/taxpayers nothing or next to nothing more.

If you read post “Patenting DNA”, you will see that the public “invests” their information (mostly without their consent or knowledge), monetarily fund the research and then research hospitals/universities patent/sell what they discover. They are the owners, not the citizens.  The hospitals/universities then charge the citizens for the test/drug, etc. and keep the money to use as they see fit.  The citizens do not have a say, they are not even allowed to know how much money is being made off the citizens investment as it has now become “confidential”.(1)  The information, and the money, has gone from being ours, to being theirs. (2)  Interesting how that happens.

Is this not exploitation of the sick? No wonder “Many (billionaires) have gotten rich from interests in …..the pharmaceutical and health-care industry”. (3)  Is research just a wealth transfer project where wealth of information and money is transferred from the many to the few?  Oh, please let me donate more.  The wealthy suffer so much.-).  Are the foundations/charities primarily fronts for the pharmaceutical companies?  We don’t know.

If we are providing the body parts and information and paying for the research, are we getting the research WE want or just the research that will line the pockets of the multinationals?

When I was in front of St. Paul’s I had a discussion with someone on this topic.  This person said the pharmaceutical/research companies need the money for marketing.  Why?  If this is a necessary medical product why do you need to spend a lot of money advertising or running around convincing people to buy as much as possible?  If this is just some cosmetic product or duplicate with a new flavour, then why is our money being invested on this kind of research?

Isn’t it time we knew where our information, our body parts and our money was going? But that would require transparency and accountability, something the medical business, in all forms, has an aversion to.  I wonder why?

And, Isn’t it time we claimed ownership of our investment?

 

  1. Breast cancer gene patents: the Canadian story – Kelly Crowe, 18 Jul 2013, CBC News
  2. SickKids Hospital dragged into U.S. Breast cancer gene suit – Kelly Crowe, 18 Jul 2013, CBC News
  3. Wealth gap: Canada’s middle class is not immune to trends of income concentration – 20 Jan. 2015, The Globe and Mail
  4. Pharmaceutical Corruption Media Articles, www.wanttoknow.info/pharmaceuticalcorruptionmediaarticles

 

  1. Ethics in pharmaceutical sales, wikipedia

 

  1. 7 Shameful Examples of Big Pharma Fraud, Vactruth.com

 

GENETIC TESTS

So, what happens to the genetic tests that are done on you, with or without your knowledge/permission [see future posts “My Story” and “Information Collected (or Not)].

Besides going to researchers (and probably the pharmaceutical companies they are associated with), it may go to insurance companies, employers, banks, marketing companies and probably a whole lot of other “people”. And this is just the start.

“Canada’s privacy watchdog is urging insurance companies and others to stop asking for access to the results of existing genetic tests.”

Federal Privacy Commissioner Daniel Therrien says it is becoming more of a challenge to protect people’s genetic privacy with recent advances in science and technology.

‘We are calling on the industry to refrain from asking for existing test results to assess insurance risk until the industry can clearly show that these tests are necessary and effective in assessing risk.’  Therrien said in a statement Thursday.

There are now hundreds of tests to help spot genes known to increase a person’s risk of certain medical conditions.

But some people may decline tests for fear a positive result may mean they could face discrimination from insurance companies or their employers.. (1)

There are currently no laws in Canada that specifically prohibit genetic discrimination.”

Declining the tests, of course, assumes the people are given an option and the tests are not just done, without the people’s knowledge/real consent, from blood and other samples collected by the medical business.

And what will happen when they “open the door to an era of personalized medicine,” where treatments are tailored to specific genetic characteristics. (2) How many other people/organizations will have access to our very, very personal information such as marketers, suppliers, banks, insurance companies, employers, other countries (who many disallow you into their country), etc.?

How much discrimination will the people face based on our specific genetic characteristics? Will they be denied having children?  Will they be denied certain health care, jobs, etc.  Will they be targeted for experimentation (with or without their knowledge)?  And the list of possible discrimination goes on…

We have no idea what’s going on and how it will affect us. It seems like a free-for-all with our information/body parts.  And once it’s out there, you don’t get it back.  And we have no idea what’s going on in the medical/government business.

The turdits, and their friends in the medical/government business, won’t/can’t protect our information and, instead, share it with all the ghouls even when there are laws prohibiting it (see all past/future posts) and, of course, in cases like genetic tests they don’t even bother with laws. That would be working in the interests of the people and gawd forbid that should happen.

 

  1. Insurers asked to stop seeking access to results of genetic tests – The Canadian Press, 11 July 2014, Metro
  2. Hospital launches legal challenge to patents on genes – Andre Picard, 4 Nov 2014, The Globe and Mail

 

ANOTHER MAJOR PRIVACY BREACH IN B.C.

Since 2010, a total of 4,420 government privacy breaches have been reported to the Office of the Chief Information Officer in B.C. That’s almost a thousand “breaches” a year. (1)  And, it only includes those reported.   The privacy commissioner’s office has “looked into some 500 privacy breaches of one kind or another involving government and its agencies over the past five years”. (9)  And again, it includes only those reported which are a very small fraction of the total “breaches” because government agencies are not required to report “breaches”.

Now, more information has been “lost” by the B.C. government. This time the education ministry  “lost” “personal information for 3.4 million B.C. and Yukon students and B.C. teachers from 1986 and 2009.   The hard drives included names, addresses, genders, birth dates and education identity numbers, teacher retirement plans, substance abuse information, mental health issues, psychological assessments, plus detailed family data, social, type of schooling, grade information, graduation status, financial aid data, and designations such as ESL and special needs, economic and education status of cancer victims and children in provincial foster care and health and behaviour issues for children in care.  (1)(2)(5)(7)  “It also included family troubles and police interventions……, letters from members of the public with specific complaints about teachers; particulars on some 1,000 cancer survivors who took part in a lengthy research trial”. (9) This information was NOT anonymous.  All information could be connected to people’s names. (8)

Why does the education ministry have information going back 30 years? The teacher retirement plans was a survey done in 2003 so the older information pertains to the children.  Isn’t there a time limit on how long the government can keep information on students and children in care.  Oh right, this is the B.C. government that keeps all information on citizens for ever.

The hard drive was discovered missing in August 2015 but the hard drive “could have been missing for as long as five years”. (4)  The ministry had been trying to track it down since early August and didn’t notify the Technology Minister Amrik Virk until around September 11, 2015.

Again, the privacy commissioner’s office listed numerous ways in which the education ministry failed to provide adequate security and provided recommendations to improve security. (1) This is the same list/recommendations as identified in previous “breaches” and, no doubt, it will be the same list/recommendations as identified in future “breaches”.  I suspect the privacy commissioner’s office keeps a copy of this list of inadequate security measures and recommendations that it just reprints for each new “breach’  because nothing changes.

The Technology Minister Amrik Virk called the “breach” “low risk” because there is no indication of fraud and identity theft. (5) What a “convenient” statement.  Apparently, the ministry has done comprehensive searches by up to 50 bureaucrats, and “they had looked in every box, in every desk, in every drawer, and they weren’t able to find it” (6), but the ministry still considers the possibility of theft to be “low”.  And, the warehouse was not equipped to secure information. (6)  Plus, when the statement was made, the ministry had not examined the potential risk to individuals or notified them. (5)  The use of the information by others may not be as obvious as identity theft.  Personal information is very valuable these days.  Based on what I’ve read, companies are building large personal information databases.  This information can be used by the company and/or sold to marketers, insurance, banks, future employers, etc. so the people whose information went “missing” may never know that they lost a job, a bank loan, insurance and so on because of the information the companies were/are able to access.  This “loss” of information could haunt these people for the rest of their lives.

And, as the privacy commissioner’s office noted: the information could cause emotional hurt, humiliation or damage to reputation, if in the wrong hands.   “I think it essential to emphasize that the affected individuals are some of the most vulnerable in our society.  They include children in care, children in custody, children with special needs, and children with health conditions. These are all circumstances that can lead to stigmatization by society in general and instances of individual discrimination.” (1)

The privacy commissioner’s office “interviewed some 16 individuals, including current and former employees. But ‘owing to the passage of time, the testimony was, understandably, often vague, incomplete or inconsistent.’ Coupled with the lack of documentation — another common occurrence with this government — she was unable to place blame on any particular individuals”. (9) So, again, no one will be held accountable.

Education Minister Mike Bernier said: “We sincerely apologize for any inconvenience this incident may have caused people” (italics mine).  Could you trivialize the matter more?  My goodness, did the government drop someone’s pen?

But just ask the B.C. government, including medical people, and they will tell you that your information is protected.

“The incident prompted the Government Communications and Public Engagement office to write a 16-page script of anticipated questions and suggested answers for politicians.” (1) So the hand puppets and toadies just regurgitate the scripted answers.

The scripted answers also state that the trend of reported “breaches” was increasing through 2014, but has since begun to decline. Other possibilities:

  1. This is a scripted answer by government so is likely a lie. See post “Our Information is Not Protected – Part I” for example(s) of how government lies.
  2. The government may just be covering up more “breaches” and not reporting them.
  3. When you are “losing” information on millions of B.C. citizens at one time, what’s left to “breach” that isn’t already out there? Again, see post “Our Information is Not Protected – Part I” where the government “illegally shared” information on 4 to 5 million B.C. citizens.

And, of course, they promise everything will be fixed so citizen’s information is protected. Until the next time!!  Because they lie!!

My question is: Is there any information left, on the people of B.C., held by the B.C. government, that hasn’t been illegally shared or “lost”??

 

 

 

 

 

  1. Education Ministry Chastised for Latest BC Data Breach – Bob Mackin, 29 JAN 2016, TheTyee.ca

 

  1. Ministry of Education failed to protect personal information involving missing portable hard drive – Dissent, 28 JAN 2016, Office of Inadequate Security

 

  1. Investigation Report F16-01, Ministry of Education, 28 JAN 2016, The Privacy Commissioner’s office; CanLII Cite: 2015 BCIPC No. 65; Quicklaw Cite: [2015] B.C.I.P.C.D. No. 65

 

  1. B.C. ministry broke rules, leading to data breach: Privacy commissioner – The Canadian Press, 28 JAN 2016, The Globe and Mail,

 

  1. B.C. education data breach: government can’t find unencrypted hard drive – 15 Sep 2015, CBC

 

  1. B.C. Education Ministry Slammed For Losing Hard Drive With Students’ Personal Info – Tamsyn Burgmann, 28 JAN 2016, The Canadian Press

 

  1. B.C. ministry broke rules, leading to data breach: Privacy commissioner – The Canadian Press, 28 JAN 2016, The Globe and Mail

 

  1. Largest data breach in B.C. could have been “completely preventable’: watchdog report – Paula Baker, 28 JAN 2016, Global News (this is actually the 2nd largest see , see post “Our Information is Not Protected – Part I” where the government “illegally shared” information on 4 to 5 million B.C. citizens.

 

  1. Privacy breach a failure of ‘executive leadership,’ watchdog says – Vaughn Palmer, 28 JAN 2016, Vancouver Sun (a paper I never bought)

 

10. B.C. student data breach could affect more than 3 million people – Amy Judd, 22 SEP 2015, Global News

USING/PATENTING OUR DNA

DNA

DNA is the molecule that is the hereditary material in all living cells.

Genes are made of DNA, and so is the genome itself. A gene consists of enough DNA to code for one protein, and a genome is simply the sum total of an organism’s DNA.

In a very real sense, DNA is information. (1)  Genes are passed on from parent to child and are an important part of what decides how children look and act (their biological properties). (11)

DNA is part of our bodies. Medical staff/researchers have to have our blood, our skin, a strand of our hair or some other part of our body to “see” the DNA.

“Canada is one of the only jurisdictions in the Western world that still allows gene patenting”. “Last year, the U.S. Supreme Court ruled that genes can no longer be patented.” (2) CHEO (Children’s Hospital of Eastern Ontario) is going to court to try to have some gene patents struck down. In this case, the patents are for “genes associated with a heart condition called long QT syndrome”. “The patents being challenged by CHEO are held by the University of Utah but were filed in Canada.” (2)  They hope that this will set a precedent that will have all other genetic patents struck down.  I hope they are successful.

“The U.S. and Europe have developed gene patent policies outlining what types of genetic information can be patented”. The European Union states that:  ‘The human body, at the various stages of its formation and development, and the simple discovery of one of its elements, including the sequence or partial sequence of a gene, cannot constitute patentable inventions,’” (6).  In other words, you can’t patent a tree, or its root, because you discovered it.  You did not invent it.

“Biotech companies want to patent genes so they can profit from testing of those genes.” Even “when patents are struck down….a company can still market tests but cannot do so exclusively, so the price drops significantly”. (2)  It is, as usual, a case of follow the money.

But, CHEO is a “leader in genetic research”.   They want your genetic information to be available to researchers and clinicians.  They believe that “restricting access to genetic information by researchers and clinicians undermines patient care and is morally and legally untenable”.  Alex Munter, CEO of CHEO said that striking down the law will “open the door to an era of personalized medicine,” where treatments are tailored to specific genetic characteristics.  “Dr. Gail Graham, chief of genetics at CHEO”, said researchers at the hospital have not and will not patent any genes they discover”. (2) My question is:  do they ask the patient for permission to use their genes for research, to keep those genes in their DNA warehouse, to share that DNA?  Is this a case of genuinely caring about the rights of the  patient?  Or, is this a case of two rival gangs fighting over turf, that turf being our bodies, our information?  Will our information just go to different researchers, without our real consent?  It is even more concerning when you get into personalized medicine tailored to specific genetic characteristics.  I find it “morally and legally untenable” that researchers, clinicians, etc. can take and use our medical information/body parts without our REAL consent.  (2)  There is a dark side to how this information can be used so we need to know if and how that can be prevented.  Again we need transparency and accountability, which is not happening.

Problems with Patenting DNA:

A patent gives a company ownership of a particular area of the human genome. (3):

(a) “Lawyer Rebecca Gilsenan says there are many dangers to having a monopoly on this patent.

‘There’s a philosophical and ethical issue about commercializing the human body and its genetic material,’ she said.” (5)

(b) “When a lab does a panel that features information on larger parts of the genome – that information cannot be communicated to patients, again because of the patent. ‘We simply cannot accept a situation where a patent prevents us from diagnosing and treating a sick child,” Dr. Graham said.” (2)  I think this means that if they accidentally discover that you have an illness, they can’t tell you about it unless they pay the patent company to test for the illness.

(c) If a person needs a genetic test, for example, for heart related problems, it must go the U.S., even if a Canadian lab is capable of doing the test. This increases cost, and reduces the number of genetic tests and possibly puts people’s lives at risk.  (6)  And once our information gets into the U.S. we have no control over it.  Then again, we, the people, have no control over our own personal information in Canada.

So far, tests for BRCA1 and BRCA2 (breast cancer genetic mutations) are being conducted in Canada and the patent holder has not taken action.  But that is not the case with all genetic patents. (2)

(c) If a person is tested for the breast cancer genetic mutations by Myriad Genetics, the person cannot get a second opinion because Myriad Genetics does not allow second opinions. (5)

(d) Other companies are not allowed to develop other tests, that may be better and cheaper because that would infringe on patents. (5)

(e) Myriad Genetics (a U.S. company), working with Canadian researchers at Sick Children’s Hospital and McGill and Laval universities (publicly funded institutions), discovered  “BRCA1 and BRCA2 human breast cancer susceptibility genes”, from some people’s DNA.  They patented the genes and created a test to identify these genes.  So, where did they get the DNA? Does a U.S. company, a foreign company, have copies of our genes, (2) and is that material (our DNA) being held outside Canada?  Quite frankly, I don’t want any company to have a copy of my DNA held in some warehouse.  But I do know that there are occasions when this is necessary.  If you are tested for an illness, they may need to keep a copy of the DNA and the test on file in case you have future health problems or court cases.  But, I believe, that information should be kept just for that purpose and only for a limited period of time.  If they want my DNA, my body part, for any other purpose they should have to get my written permission.  And I mean real consent, not manufactured consent.  And I would, of course, insist on knowing (with proof) how the information would be used and who would have access to that information (see next post “Genetic Tests”).  Plus, I would want a say in how long they keep my DNA on file.  But then again, we live in a illusionary democracy (see post “Why I Don’t Vote – Part II), where I have no say in what happens even to my body parts/information.

CHEO’s CEO Alex Munter said: “We hope to obtain guidance from Canada’s Federal Court that will allow all provinces to approve genetic tests conducted by Canadian healthcare providers. Our patients deserve nothing less”. (6) I believe patients deserve nothing less than to be treated with respect and asked for real consent before genetic tests are performed. And that real consent is based on being informed as to what tests are going to be done, by whom, for what purpose, how that information will be protected, will any of it be patentable and what do these people getting my information/body parts get out of it (wages, profits, royalties….).  And this would need to be provided in writing so the patient can give their signed consent or not.  Particularly as “Genetics is poised to make major advances” Dr. Gail Graham, chief of the genetics program at CHEO, said”.  (6)  These people in the medical/research business have proven they cannot be trusted so they must be held accountable with OUR VERY sensitive information.  And especially because the BC government has already been in discussions to sell our information (and I suspect are already doing it). (7)

Myriad Genetics and HSC Research and Development Limited have filed a court case against Ambry Genetics, a “company seeking to offer a cheaper test for the breast cancer susceptibility genes”.  “HSC Research and Development Limited,” is a legal entity controlled by SickKids in Toronto. It acts as the hospital’s licensing arm for the commercialization of intellectual property. (4)

“Luigi Palombi, an Australian lawyer and author of a book about the race to discover and patent the BRCA gene mutations, states: ‘I think it is outrageous for any publicly funded research institution to be put in this situation.’”(4)  It brings forward this whole issue of just how far publicly funded research and research institutions can collaborate with private industry. (3)  It is all well and good for politicians to say that we need to encourage commercialization and we need to encourage public institutions to partner with commercial institutions.(3)  But it is inevitable once they have come to this sort of arrangement with a commercial entity, and Myriad’s modus operandi from the very beginning was, ‘We are going to patent these genetic mutations because we want to make money out of it.’ (4)  Once you have publicly funded institutions getting into bed with these guys, well then that raises a whole series of other questions and issues,” Palombi said.”I think the Canadian public and tax payers have the right to question and find out how this happened, why and what it means for them.”(4)  I would like transparency and accountability on how our information is being used.  I am not a lab rat, I am not fodder for cannibals to feed off, to commercialize.  Or, at least, I don’t want to be but I don’t have a say in the matter; they just take want they want from my body when I am sick and vulnerable.

People, especially researchers and government, will tell you the value of anonymized research data. (10) And, I believe this is true, to a point.  But, as we know from the post auditor general – PARIS report – 5/24/2010 and the BC health firings scandal, post dated 12/27/2015, our information is not anonymized and it is certainly not protected.  In most cases, government/medical business had no idea who was downloading our information or with whom it was being shared (or so they say). In other cases, where the government/medical business knew who was accessing our information, the information was being shared illegally.

Another issue is that if you collect enough information on an individual, even if it is all anonymous or de-identified, you will be able to identify, or re-identify, the person. In some cases it is not difficult to identify the individual and, in other cases, it takes a great deal of work.  But, as technology advances, identifying people from a collection of anonymous or de-identified information will become easier. (8,9)

If we, the citizens, are to benefit from any research/studies involving our body parts and our information, then we need to know the costs of sharing that information (and not just monetarily) and the benefits expected to be gained. So far, we have no idea how our body parts, and our information, are being used.  I consider that a gross violation of my rights.  In addition, isn’t selling/trading/bartering our DNA, a part of our body, illegal?  Isn’t this the same as trafficking in body parts, an international crime?  Or do you call it pimping when they are selling your body?

See blog “Newborn Blood Samples”, June 16, 2011 to read more about the dark side of DNA collecting.

Some other interesting information came to light:

(a) “two Canadian researchers were on the winning side in the race to discover the BRCA2 gene mutation back in 1995, and their research institutions share ownership of several U.S. patents with Myriad Genetics.” (4)

(b) these institutions receive royalties and ”That money is ‘critical to these institutions, the majority of which are publicly funded research universities and a children’s hospital, the Hospital for Sick Children located in Toronto, Canada,’ the documents allege, adding that if SickKids and the universities lose royalties from the company’s monopoly on the cancer gene tests, it will ‘impact their ability to fund ongoing programs and new endeavors’.” (4) So how is it that when publicly funded institutions make a discovery, the patent is in the name of its licensing arm and all royalties go to the institution and not the government (on behalf of the people who paid for the research)? With a monopoly they can charge the people more for the tests, which the people paid to develop, and the money goes to the institution to use as they chose.  So, the institutions are just milking the people.

I would like to think that CHEO is going to court for altruistic reasons, solely for the care of the patients but I doubt it. Look at the timing.  For at least 20 years (3) the Canadian medical system has ignored DNA patenting.  Now, just after all the bad publicity about privacy breaches (especially Ontario and B.C.), some medical people are attempting to do something that puts them in a good light.  Is this mainly PR?  Or, is it because genetics research has progressed to the point that it is very profitable?  Now, as I said before, I hope CHEO wins.  But will our information, including our DNA,  be sold/traded/bartered with THEIR low-life friends.  Maybe they should spend time explaining what they do with our information, with whom they share our information, how they are protecting our privacy, or, at least, being honest about how our privacy is not being protected and what they get out of it.  But that wouldn’t be in their interests.

IT’S YOUR DNA AND IT DOESN’T GET ANY MORE PERSONAL THAN THAT. (Michelle Salas)

Some other points of interest:

  1. Police are now trying to collect DNA illegally (13). I wonder with whom that DNA would be shared. Oh that’s right, we don’t have the right to know.
  2. “The courts may be the final barrier to protect Canadians from unfettered genetic experimentation as scientists abandon public interest research in favour of corporate funding and ambitious, cutting-edge science, lawyers heard yesterday.

The independent scientist who conducts research for the public good ‘barely exists any more,’ according to one leading expert on technology and public policy.

‘They get up and talk as if they are neutral.  But they almost always have some share in the company or some self-interested gain for their work,’ said Philip Bereano, a professor from the University of Washington in Seattle.

Genetically modified foods and health care based on genetic research are being introduced into North America by stealth, with large companies using patent law as a weapon against farmers, consumers and patients, panel members said.  Billions of government dollars will be spent to modify genes…. “ (14)

  1. Applied genetic research is emerging as the greatest single driver of global economic growth since the industrial revolution…. “If you are ignoring these trends, you’re ignoring the biggest databases ever generated by mankind.” (15) So, exactly who is profiting from our bodies?  And what are they doing to us?
  2. Tartu, a pretty university town in northern Estonia, is about to become home to the world’s largest genotype and phenotype bank. This bank’s currency will be blood samples and DNA analysis.

In larger countries, it would be more difficult to enact the necessary legislation for such a project, he said, but “in a small country, we can explain it to the people and adopt the law in [a short] time, which we did.  British Columbia didn’t have a problem but, of course, they didn’t explain it to the people; B.C. just enacted a law allowing them to take people’s DNA, and anything else, when the people get healthcare, which happens to almost everyone at some time (and probably when they give blood).

“Start-ups and spin-offs will result in a new economic sector,” he said, “with lots of well-paid jobs in the high-tech sector: gene and biotechnology, bioinformatics, etc.

The foundation proposes to map genetic data of at least three-quarters of the 1.4 million people of Estonia.

Such projects have often run into criticism.  What if sensitive information falls into the wrong hands?  Could employers and insurers discriminate against people thought to be at genetic risk for disease?

Iceland’s deCode genetics project is the most controversial of all.  In a deal with European pharmaceutical company Hoffman Laroche, deCode has exclusive rights to all Icelanders’ medical and genetic data, and any resulting intellectual property”. (16) (17)

  1. 13. Conflict of interest – “…Just look at the conflict of interest statement in any pharmacogenomics journal today and you will find that the head of each of the major studies and a select group of investigators, funded by public tax payers money from NIH, and YOUR DNA, are going to make huge profits from royalties and huge salaries these physicians-researchers earn because they control proprietary samples that are otherwise hard to come by. Just by tying a SNP to a treatment outcome or diagnostic outcome, there are big profits in the healthcare business to be made; with no real innovation! Hence, one wonders about the real motivation underlying collection of blood samples with consent and especially without consent – a cure or a profit!” (12)
  2. “The administration at UBC, where drug research money abounds and where the Dean of Medicine, incredibly, sits on the board of LifeSciences British Columbia, the main lobby group for BC’s pharmaceutical industry, doesn’t seem to be too worried about our pancreases”. – Diabetes Mongering a dangerous deception – Alan Cassels, July 2013, Common Ground, pg. 13 And round and round the same people go, conflict of interest abounding.
  3. “According to US consumer group Public Citizen, ‘The pharmaceutical industry now tops not only the defense industry, but all other industries in the total amount of fraud payments for actions against the [US] federal government under the False Claims Act.'”
  4. “Remember this: money has the ability to pollute even the most noble aspects of healthcare”. – Decoding drug lobbyist rhetoric – Alan Cassels, May 2013, Common Ground, pg. 7

 

  1. Genome News Network
  2. Hospital launches legal challenge to patents on genes – Andre Picard, 4 Nov 2014, The Globe and Mail
  3. Breast cancer gene patents: the Canadian story – Kelly Crowe, 18 Jul 2013, CBC News
  4. Sick Kids Hospital dragged into U.S. Breast cancer gene suit – Kelly Crowe, 18 Jul 2013, CBC News
  5. Legal fight over breast cancer gene begins – 08 Jun 2012, CBC News [no journalist name given]
  6. Ontario hospital launches lawsuit against owners of gene patent – Marlene Leung, 3 Nov 2014, CBC News
  7. At Time of Firings, Health Ministry Discussed Selling Patient Data – Andrew MacLeod – 20 Mar 2015, TheTyee.ca
  8. 8. No silver bullet:  De-identification still doesn’t work – Arind Narayanan & Edward W. Felten,   July 9, 2014, http://randomwalker.info/publications/no-silver-bullet-de-indentification.pdf
  9. Identifying Participants in the Personal Genome Project by Name –   http://dataprivacylab.org/projects/pgp/index.html
  10. Tragedy of the Data Commons.  Jane Yakowitz, Harvard Journal of Law & Technology,    Volume 25, Number 1 Fall 2011
  11. Gene. Wikipedia
  12.  A Cure or A Profit – Council of Canadians
  13.  Native Youth Leader Resigns Over “Unusual” Police DNA Demand – David P. Ball, 22        Aug 2013, 24 Hours
  14. Courts protect public against scientific “elite” – 14 Aug 2001, National Post
  15. Genomes to fuel economic ‘revolution’ – Michael Lewis, 31 May 2002, Financial Post
  16. Estonians bet on gene pool – Maeve Haldane, 11 Jun 2001, National Post
  17. Estonia sells its gene pool (A genetic database project is an ethical timebomb) – Michael Gross, 09 Nov 2000, The Guardian

RIGHT TO KNOW WEEK

When I was in B.C. I attended a “right to know week” talk at the library. A woman who represented the library introduced someone from the Privacy Commissioner’s Office, someone from the police department and another person.  These three people then gave their talk.  Basically, the Privacy Commissioner’s Office and the police department talked about how wonderful they were.  It was all one-sided; there was no one on the dais to disagree with anything they said.

But the audience had an opportunity for questions and comments. Most were directed at the Privacy Commissioner’s office.  The first at the microphone was a gentleman.  Just after he started talking he was interrupted by the woman from the library, who yelled at him comments like “who cares what you think”, “who cares what you have to say” and so on.  He had the microphone and she had no right to speak.  When she was finally finished, the gentleman continued with his comments/questions as if she hadn’t spoken.  I admired his patience and fortitude.  I sat in the audience, astounded by this woman from the library, and said nothing.  I should have spoke up but I didn’t.  I would now.

A couple rows behind the microphone sat three women in the last three seats of the row. They ridiculed the people who were speaking at the microphone.   I didn’t get the impression that these women just walked off the street and thought it would be fun to listen to the speeches and then heckle the people in the audience who spoke.  It looked planned.   I, and I’m sure others, gave them dirty looks.  Finally, they left.  But again, I should have spoke up but I didn’t.  I would now.

It seems that you have the right to know, as long as it is what the government and their toadies want you to know (otherwise known as propaganda).

Lack of Independence

Mary Carlson was Executive Director of the Office of the Information and Privacy Commissioner for B.C. She then became Deputy Registrar of the Office of the Registrar of Lobbyists for British Columbia.  The privacy commissioner’s office is suppose to operate independent of the politicians, both provincially and federally.  But, I don’t believe you can operate independently if your next job depends on being “liked” by the politicians.  It’s all smoke and mirrors.

David Loukidelis was the B.C. information commissioner before he accepted the post of deputy attorney-general. As Vaughn Palmer pointed out, by bringing him in-house they silenced a critic (in some areas), at a convenient time and turned the critic into a lap-dog. (Sabotage? Or merely incompetence?, Vaughn Palmer, 25 Jan 2010, View from the Edge).

PLOYS (or TACTICS)

(Also read prior posts “Assault” July 22, 2010, “Security Guards, August 8, 2009, ‘Threats” September 4, 2008)

I include this post because I think people should know what happens, in Canada, when they exercise free speech against the government. You will be threatened (life, limb, family, job…), intimidated and harassed, plus they will attempt to demean you, and will use diversionary tactics when they can’t prove that what is being said is false. I don’t say this to scare people off, to prevent them from speaking the truth, quite the opposite.  It is only when more voices speak out that these threats against our rights, our democracy, our lives, will stop.

Someone told me at the beginning of my time in front of St. Paul’s Hospital that the degree to which they try to intimidate, harass and threaten you is a reflection of how close you are to the bulls-eye. I thank the person for the comment because it helped me over the years to withstand the abuse.

A man, while professing to agree with my handout, claimed that he did not buy into conspiracy theories. I find the use of the words “conspiracy” and “paranoia” very manipulative.  If you want to demean someone and try to shut someone up those words are usually used.  My response to this man was that since the politicians, and the catholic/medical business, refuse to tell us with whom they are sharing our information and how it is being used then obviously something unethical and morally illegal is going on. These questions are so straight forward there shouldn’t even be an issue about answering them honestly.  So, until possibilities are proven to happen or not to happen, anything is possible.  I try to keep an open mind to all possibilities.

They also tried the “I’m your friend” tactic. They would pretend they agree with what you are doing, act as if they are on your side so they can collect information on you and try to manipulate you.  For example, a guy came up to me and said he was a doctor, agreed with everything I was saying, knew information was going all over the place, and so on.  By now I had given up talking to medical people because my experience was that they just lie, con, and harass.  But he knew information was going all over the place, and did I know what they were doing now so I was interested, he caught me.  As I listened to what they were doing now I heard him talk about medical personnel and how they had to get immunized and a list was posted showing who was and who wasn’t immunized, etc.  So he talked about the medical personnel, not the patients.  All he seemed to care about was his own self-interest, not the patients.  Then he said, what I believe was the real message, “everyone that walks by thinks you are striking, everyone who walks by thinks you are crazy, you can’t accomplish anything”, and so on.  What I found interesting in his comments was:

  1. His assumption that he knows what everyone who walks by is thinking.
  2. People thought I was striking and thought I was crazy. I think that says more about him and the rest of the medical personnel than me.
  3. If I wasn’t accomplishing anything then the medical system wouldn’t have people like him constantly trying to persuade me to “go away”.

I don’t mind people debating the issue(s) or telling me I’m wrong if they can prove it. But these people have no facts, evidence or rational argument to dispute what I say so they attack the messenger, not the message.  In fact, I would have loved to have had it proven that I was wrong.  But my own experience, investigations such as the auditor general’s, and breach after breach proves otherwise.  Actually I think they should change the word breach to a flood.  When everyone’s information is being shared that is no longer just a breach.  (see post Auditor General – PARIS report – 5/24/2010 and post Our Privacy Is Not Protected – Parts I and II – 12/27/2015 and 12/29/2015)

A man, walking by while I was at St. Paul’s Hospital, told me that if I pushed this issue too far “they” would put me in a padded room and then only god could help me.  I wouldn’t have been surprised because that’s our so-called democracy.

When I first stood in front of St. Paul’s Hospital it was mostly men who came to “talk” to me. Some would try to be my friend, some would make comments like “looking for a date”. I wondered if they were using a typical government tactic that I call the “pimping tactic”.  If a woman isn’t happy in her job (or whatever) just get her a man (or a second one) and get her F(well, you know the word) and she’ll be fine.  That didn’t work so after a while, they sent the women to “talk” to me.  That didn’t work either so it must have confused the hell out of their small minds.  The women sometimes even had “handlers”.  Example, a woman came to “talk” to me.  Realizing that she was from the hospital I turned and walked away.  When I turned around again I saw her ask, through gestures and voice, a male, standing on the steps of St. Paul’s Hospital, what to do next.  He told her to come back to the hospital.  When he saw me watching he weakly smiled and shrugged.                                                                                                                                                                                             I was at a public talk and the speaker said that they didn’t want anyone to be in the room who didn’t support public health care.  I got the impression that it was directed at me and possibly a few other people.  Some people have tried to claim that by raising awareness of what the medical system is doing that I am supporting private health care.  That was another ploy to try to make me go away, to discredit me.  I don’t support private health care and I have no doubt that their privacy issues are as bad or worse than the public sector.  You could look at the medical system like a child.  A child wants what it wants and will throw a tantrum to get it.  If you want that child to grow/evolve into a decent human being/institution then it has to learn morals, ethics, integrity, caring, compassion, accountability, transparency and that it does not pick on those more vulnerable (only cowards do that).  And, of course, a child/institution does not learn better behaviour if you ignore, or support, their wrong-doings.  Its people who don’t care about the public health system who ignore/support their bad behaviour.  Of course, those working in or running the catholic/medical system are adults but, apparently, they still need to be taught the values we want the institution to reflect.  They do have a bad influence, the politicians, so this will be difficult.

It was obvious I had been researched. They would tell me information, that was suppose to be private, in a variety of areas non-medical.  I assume the purpose was to intimidate me, as in ‘see we can access any information on you we want’.  Example, I had responded, years ago, to a request for comments, by the government, on the privatization of Canada Post.  The comment was suppose to be confidential.  At St. Paul’s Hospital, a person had approached me at the same time as another person, but supposedly independently, yet both asked questions, for whatever reason, about my views on the U.S.   As one of them was leaving, she had her back to me, then turned her head around and gave me a knowing look and, out of the blue, said that Canada Post would be privatized (this had not been part of our previous conversation).  So I guess that’s a done deal although maybe not with Trudeau “in power”.*   But I don’t think her comment was about Canada Post per se but about letting me know they had access to this confidential information.  I was raising awareness that our privacy was being violated and they thought they could scare me away by continuously proving that I was right.  Strange people!

I was threatened, intimidated, assaulted… and not just in front of St. Paul’s Hospital but I encountered this in the other areas of my life. This is just one example of the many things that happened, someone left a “gift” on my doorstep which I turned over to the police.  I could take it because I believed in the necessity and importance of what I was doing.  I actually found it fascinating, in a macabre way.  I knew that it wasn’t about me but it spoke volumes about them.  These are people who couldn’t refute what I was saying.  So, instead they pulled every underhanded trick they could to make me go away.  And this from people who claim to be caring, compassionate and democratic.  I would stand there and wonder, my gawd, what are they doing to us that they have to go to such lengths to hide it.  So, instead of scaring me away, they make me realize how important it was that I stay and raise awareness.

They said, and did, anything that they thought would intimidate me or embarrass or demean me. What they thought would embarrass/demean me was really a reflection of THEIR discriminations.  It certainly told me a lot of what they thought of certain segments of the population.  I wondered how these segments of the population were treated as patients (actually, I did find out a little bit -see “My Story”).

I reached a point where I thought they couldn’t shock me anymore and then they would do something that would shock me. Finally, I realized that I can’t think as low as they can sink.  So each time they pull something that is even lower than usual I am shocked.

I had already planned on leaving B.C. for a variety of reasons such as the continual violation of privacy. I didn’t want to be sold/traded/bartered.  So my illness didn’t scare me away but it did move the agenda up a bit (see future post “My Story”).

It certainly appears they have been trying to find something to hang me with, to blackmail me into going away. Since I haven’t totally disappeared I’m sure they will keep trying.  It’s what they do to hide things.  But who/what I am doesn’t matter, whether I’m evil or a bloody saint, what matters is whether the information I give out is true.  And that is easy enough for people to determine besides the sources I provide.  Ask the health system exactly who they share your information with, and the purpose, and when they won’t give you a real answer, ask yourself why.  What information does the medical system collect on you, why, and is it necessary for your specific health concern?  If they want information for any other purpose, why don’t they let you know and ask your permission?  And, of course, there are the continual scandals proving that our information is not being protected.

You do have to use common sense when you ask them questions. When I was in front of St. Paul’s Hospital a person told me that she had asked the medical staff about whether her privacy was protected.  And they said it was protected.  Well, what did she think they would say?  Seriously, to assume that the medical staff would admit that her information wasn’t protected, was being shared all over the place, was farcical.  You have to get any answers in writing or, otherwise, tell them to prove it because they lie, as all the evidence proves.

*An aside – After I moved I contacted Canada Post regarding an issue with mail forwarding. I was told that, before they would look into the issue, I would have to give them my phone number or email address because they don’t communicate by mail.  I read an article in the Globe and Mail titled Canada Post Head Makes Big Bet on his ‘winning horse’ , by Barrie McKenna, May 25, 2015, in which CEO Deepak Chopra chastised Canadians for not using mail.  I wrote to the CEO Deepak Chopra about my issue and his hypocrisy.  I received a response by mail.  Was he selected as CEO to ensure Canada Post’s privatization?

 

 

 

January 27, 2016

 

SELF-ENTITLED

 

 

The Charter of Rights and Freedoms – Fundamental Rights:

 

Section 15.

 

  1. Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination   (1)

 

The privacy act is a legal document.

 

Yet, the medical business has a two-tiered system, those who have the right to privacy (those with a sense of self-entitlement) and those who do not, those who are sold/traded/bartered/experimented on and those who are not.  The self-entitled people, as selected by the medical business, have rights the rest of the citizens do not.  The self-entitled people include medical personnel.  That’s one of the reasons they don’t care about our rights because their rights are protected.

 

And isn’t it called discrimination when one group has privileges that is denied to another group.

 

I believe the two-tiered system, giving some people rights and privileges denied to others, is a violation of the Charter of Rights and Freedoms, a violation of the law, a violation of our fundamental rights. But, as we know, the medical business/government do not care about the rights of most citizens or the law.

 

 

Elites, Upper/Lower Class

 

I often hear/read the terms elites, upper/middle/lower class which imply that some people are better than others, that some people are “inferior”. It usually is used relative to money and power.  I would hope people would find new words because some people are NOT better than others.  For example, a person gains a lot of money by brown-bagging (Brian Mulroney, and others, were accused of this), and other unscrupulous means vs a person who wins a lottery and gives it away, not because they have a lot of money but they have enough and others do not.  Who would you consider the better person, the elite, the upper class?  I would hope that people would start using specific terms like the 1%, or people with more money or people with political control.

 

Sometimes the terms are used in relation to someone who is well-educated in political science or mathematics, etc. but who knows little or nothing about growing food, building a house, or social work and so on.   So who is “more important” or is neither and each is simply educated in a particular area (school and/or self educated).

 

This also applies to the concept of social status; for example, doctors are usually considered to have a higher “social status” again due to money and the “job title”.

 

I find these terms arrogant, manipulative, a form of brainwashing, as well as archaic, baggage from the past that should be left behind. If the terms social status, elites, etc. referred to people with values such as morals, ethics, integrity they might be appropriate..  But they don’t.  So – Let’s evolve and get rid of them.

SELF-ENTITLED

The Charter of Rights and Freedoms – Fundamental Rights:

Section 15.

  1. Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination   (1)

The privacy act is a legal document.

Yet, the medical business has a two-tiered system, those who have the right to privacy (those with a sense of self-entitlement) and those who do not, those who are sold/traded/bartered/experimented on and those who are not.  The self-entitled people, as selected by the medical business, have rights the rest of the citizens do not.  The self-entitled people include medical personnel.  That’s one of the reasons they don’t care about our rights because their rights are protected.

And isn’t it called discrimination when one group has privileges that is denied to another group.

I believe the two-tiered system, giving some people rights and privileges denied to others, is a violation of the Charter of Rights and Freedoms, a violation of the law, a violation of our fundamental rights. But, as we know, the medical business/government do not care about the rights of most citizens or the law.

Elites, Upper/Lower Class

I often hear/read the terms elites, upper/middle/lower class which imply that some people are better than others, that some people are “inferior”. It usually is used relative to money and power.  I would hope people would find new words because some people are NOT better than others.  For example, a person gains a lot of money by brown-bagging (Brian Mulroney, and others, were accused of this), and other unscrupulous means vs a person who wins a lottery and gives it away, not because they have a lot of money but they have enough and others do not.  Who would you consider the better person, the elite, the upper class?  I would hope that people would start using specific terms like the 1%, or people with more money or people with political control.

Sometimes the terms are used in relation to someone who is well-educated in political science or mathematics, etc. but who knows little or nothing about growing food, building a house, or social work and so on.   So who is “more important” or is neither and each is simply educated in a particular area (school and/or self educated).

This also applies to the concept of social status; for example, doctors are usually considered to have a higher “social status” again due to money and the “job title”.

I find these terms arrogant, manipulative, a form of brainwashing, as well as archaic baggage from the past that should be left behind. If the terms social status, elites, etc. referred to people with values such as morals, ethics, integrity they might be appropriate..  But they don’t.  So – Let’s evolve and get rid of them.
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