Autism Society Canada Misrepresents Autism On Its Web Site Makeover By Hiding The Many with Autism AND Intellectual Disability

The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that once it was back up the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again.  ASC, on its "new" web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that  as much as  50% (World Health Organization) of persons with autism disorders also have an intellectual disability:

"Q: Do persons with autism always suffer from intellectual disability?

A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability."

(World Health Organization, September 2013) 

Canadian families of children with autism disorders should be aware of the very high % of persons with autism disorders who also suffer from an intellectual disability.  Those families should also be aware that many with autism and intellectual disability have very high rates of seizures and increased mortality.

Statements below from a more reliable source that takes autism disorders more seriously than the Autism Society Canada appears to:  the American Academy of Pediatrics in a statement concerning Management of Children with Autism Spectrum Disorders published in 2007 and reaffirmed in 2010 and 2014. 

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

Canada Should Fulfill Its International Commitment to the WHO and Develop a Real National Autism Strategy

Canada is on record as being a member state of the World Health Organization an organization which has just recently passed a resolution on Autism Spectrum Disorders by its member states  which, among other things, requests the Director General to work with member states to  strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems.   All member states including Canada (and the United States) supported the resolution.  In doing so Canada has made an international commitment, to the World Health Organization,  to develop a real national capacity to address autism and other developmental disorders.   

Under the Canadian Constitution international relations are within the constitutional jurisdiction of the Government of Canada which, under the Stephen Harper - Mike Lake government has expressly refused to develop, let alone strengthen Canada's national capacity to address autism on the grounds that health care is within provincial not federal jurisdiction.  This argument is of course bogus, nothing stopped the federal government from cooperating with the provinces to develop a National Health Care (medicare) system in the first place. Regardless of history it is Ottawa that must implement international commitments and the Canadian government, despite the efforts of a strong parent led autism advocacy movement in British Columbia, Ontario, New Brunswick and PEI and political leadership of the late Andy Scott,  Peter Stoffer, Shawn Murphy, Glenn Thibeault and Senarot Jim Munson, has yet to begin to develop our national capacity to address autism and other developmental disorders.  

Canada is listed on the UN web site as member state of the WHO:

"Countries

All countries which are Members of the United Nations may become members of WHO by accepting its Constitution. Other countries may be admitted as members when their application has been approved by a simple majority vote of the World Health Assembly. Territories which are not responsible for the conduct of their international relations may be admitted as Associate Members upon application made on their behalf by the Member or other authority responsible for their international relations. Members of WHO are grouped according to regional distribution (194 Member States).

C

• Cabo Verde
• Cambodia
• Cameroon
• Canada"

 As reported on the  Autism Speaks website on May 23, 2014:

"Today the World Health Assembly adopted a formal resolution making autism a global health priority. The assembly is the governing body of the World Health Organization (WHO). As such, the resolution brings a formal commitment by member states of the United Nations."

The resolution adopted by ALL WHO member states including Canada is titled Comprehensive and coordinated efforts for the management of autism spectrum disorders. In paragraph 2 of the resolution Canada, and other WHO member states through the World Health Assembly:

2.   REQUESTS the Director General:

(1) to collaborate with Member States and partner agencies in order to provide support and to strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems, to addressing mental health and disability, and in line with existing, related action plans and initiatives;

The member states, including Canada, are also specifically requested:

(4) to increase the capacity of health and social care systems, as appropriate, to provide services for individuals and families with autism spectrum disorders and other developmental disorders;

(7) to strengthen different levels of infrastructure for comprehensive management of autism spectrum disorders and other developmental disorders, as appropriate, including care, education, support, intervention, services and rehabilitation;

The current federal government of Stephen Harper and Mike Lake has doggedly refused to develop a National Autism Strategy or commitment of any kind to increase and strengthen systems and infrastructure necessary to provide services and support for individual and families with autism spectrum disorders and other developmental disorders.  The federal vs provincial jurisdiction argument did not prevent Canada from developing a national medicare system through cooperative means.  

The international commitments made by Canada through its membership in the World Health Organizations now provides a further rationale for developing a Real National Autism Strategy one that increases the capacity and strengthens the infrastructure necessary for Canada to provide the necessary health, social care other support required by autistic Canadians and their families to live full, decent lives.

 

Whooda Thunk It? CNN: Study Raises Bias, Timely Disclosure Questions About Pharma Funded Drug Trials

Whooda Thunk It?

CNN reports that a recent study has disclosed evidence of bias in pharmaceutical company funded drug trials. The study found evidence of an inherent bias in favor of the drug being studies with such studies being 4 times more likely to report outcomes that favored the drug of the sponsoring pharmaceutical company. Industry funded drug trials were also less timely in providing public information about the trial results:

Researchers from the United States and Canada looked at 546 drug trials registered in ClinicalTrials.gov, a registry of both federal and private trials in the United States and abroad. 346 of them, or 63 percen, were funded by the drug industry. The remaining 200 were paid for by government or non-profit organizations. Study authors found that more than 85 percent of industry-funded trials in their sample posted favorable outcomes and were 4 times more likely to report findings that favored their drug.

"We did this study in order to determine whether there is an inherent bias because pharmaceutical companies fund trials on products in which they have a financial interest," said study co-author Dr. Kenneth Mandl of Children's Hospital, Boston. "The most reassuring result would have been that the rate of favorable outcomes would be the same regardless of funding sources. In a very dramatic way that was not the case and what we need to ascertain is if the cause of this shift toward favorable findings among trials funded by pharmaceutical companies is related to the details of the protocols and study design."

Dr. Florence Bourgeois, also of Children's Hospital, Boston and lead author of the study says typically trials sponsored by drug companies are more efficient and well funded. Still, she found the result stunning. "The implications of these findings are that we need more oversight in the way clinical trials are designed as well as in the analysis and reporting of the results. One option may be to make study protocols directly available on clinicatrials.gov as well as the comprehensive reviews complied by the FDA on trial results." She continued, "While we cannot specifically point to which factors contribute to the association between funding source and positive results reporting, our findings speak to the need for more disclosure of all elements of a study."

...

According to Mandl, industry funded trials also were less timely in terms of providing public information including trial results. He says even though drug trials are overseen by the Food and Drug Administration, there are still some variables that could favor pharmaceutical companies, including placebo comparisons, dosing and duration. "The concern is the pharmaceutical industry is funding the studies of the drugs in which they have a vested financial interest."

The influence of pharmaceutical companies in last years widely criticized H1N1 pandemic was examined by the Parliamentary Assembly of the Council of Europe (PACE). In its March 23 2010 report The handling of the H1N1 pandemic: more transparency needed the PACE expressed concern over the connections between World Health Organization (WHO) science advisors and pharmaceutical company interests:

11. Independent experts from the medical community mainly criticised the agenda setting and governance process concerning the H1N1 flu in terms of the criteria used for declaring a pandemic, the lack of empirical evidence justifying such a step and the clearance to use certain medicines and vaccines. They also repeatedly raised the issue of the influence that private stakeholders from the pharmaceutical industry might have had on major decisions taken by international and national authorities. For the purpose of this memorandum the rapporteur has compiled the main issues raised in a critical perspective. All arguments presented seem to have one common reference point: the disparity between the relatively mild unfolding of the influenza and the actions taken at European and national level.2

None of this, of course, is to suggest that there is any  unhealthy pharmaceutical company influence on public health authorities involved with autism issues ... right Dr. Gerberding?   Maybe Dr. Julie Gerberding, President of Merck Vaccines  can put to rest fears of pharma conflicts of interest by pushing for a comparative study of autism rates in vaccinated and unvaccinated populations as once called for by  former CDC  Director Dr. Julie Gerberding who once said that "such studies could be done and should be done".

Council of Europe Committee Report Denounces Unjustified Swine Flu Scare, Waste of Public Money

Attached is the press release from the Social, Health and Family Affairs Committee of the Parliamentary Assembly of the Council of Europe (PACE) outlining the conclusions of the provisional PACE report, The handling of the H1N1 pandemic: more transparency needed. The Press Release  denounces the unjustified Swine Flu scare and waste of public money. Fiona Godlee, Editor-in-Chief of the British Medical Journal,  told the Council that, according to an investigation by her journal, scientists who drew up key WHO guidelines on stockpiling flu vaccines had previously been paid by drug companies which stood to profit.

Meanwhile, here in New Brunswick, Canada, on the same day the Council of Europe report was released questioning the handling of the H1N1 flu our Department of Health announced plans to expand  our seasonal flu vaccination program to cover all children under 18 "after the success of last fall's H1N1 campaign."  The Department of Health Deputy Chief Medical Officer Paul Van Buynter measured success solely by the large numbers of New Brunswickers who received the H1N1 shot.  There is no mention of the many credible voices, in Canada and in Europe who have questioned whether the scare campaign launched in Europe and elsewhere including here in New Brunswick was justified.

Press release - 455(2010)

PACE Health Committee denounces ‘unjustified scare’ of Swine Flu, waste of public money

Strasbourg, 04.06.2010 – The handling of the H1N1 pandemic by the World Health Organization (WHO), EU agencies and national governments led to a “waste of large sums of public money, and unjustified scares and fears about the health risks faced by the European public”, according to a report by the Social, Health and Family Affairs Committee of the Parliamentary Assembly of the Council of Europe (PACE) made public today in Paris.

The report, prepared by Paul Flynn (United Kingdom, SOC) and approved today by the committee ahead of a plenary debate at the end of this month, says there was “overwhelming evidence that the seriousness of the pandemic was vastly overrated by WHO”, resulting in a distortion of public health priorities.

Presenting his report, Mr Flynn told the committee: “this was a pandemic that never really was”, and described the vaccination programme as “placebo medicine on a large scale” (see video below).

In its adopted text, the committee identifies what it calls “grave shortcomings” in the transparency of decision-making about the outbreak, generating concerns about the influence of the pharmaceutical industry on decisions taken. Plummeting confidence in such advice could prove “disastrous” in the case of a severe future pandemic, it warns.

In particular, the WHO and European health institutions were not willing to publish the names and declarations of interest of the members of the WHO Emergency Committee and relevant European advisory bodies directly involved in recommendations concerning the pandemic, the parliamentarians point out.

However, attending the meeting was Fiona Godlee, the Editor-in-Chief of the British Medical Journal, who told the parliamentarians that, according to an investigation by her journal, scientists who drew up key WHO guidelines on stockpiling flu vaccines had previously been paid by drug companies which stood to profit.

The WHO has been “highly defensive”, the committee said, and unwilling to accept that a change in the definition of a pandemic was made, or to revise its prognosis of the Swine Flu outbreak.

The committee sets out a series of urgent recommendations for greater transparency and better governance in public health, as well as safeguards against what it calls “undue influence by vested interests”. It also calls for a public fund to support independent research, trials and expert advice, possibly financed by an obligatory contribution of the pharmaceutical industry, as well as closer collaboration with the media to avoid “sensationalism and scaremongering in the public health domain”.

The report is due to be debated by parliamentarians from all 47 Council of Europe member states on Thursday 24 June during PACE’s summer session in Strasbourg.

Contacts

In Paris: Francesc Ferrer, mobile: +33 (0)6 30 49 68 22

In Strasbourg: PACE Communication Division, tel. +33 (0)3 88 41 31 93, mobile: +33 (0)6 30 49 68 20

Was the H1N1 a Fake Pandemic? A Council of Europe Motion to Investigate Drug Sellers Influence

In WHO to Clarify H1N1 Data After False Pandemic Claim Bloomberg  reports that "The Parliamentary Assembly of the Council of Europe plans to debate the theme “Faked pandemics: a threat to health” at a plenary session in Strasbourg, France" next week.  

Not to quibble too much with "B"but the debate is not just debate of a theme in an academic or abstract sense.  It is  debate on an actual motion which calls on the member states of the Council of Europe to conduct investigation of the influence of "drug makers" in defining and declaring pandemics.

I am not, and do not pretend to be, prescient.  I do not know what the outcome of the debate will be.  Given the emphasis placed by governments around the world on vaccines as public health tools and the active and vigorous discouragement of any debate of any safety concerns around vaccines though I would not expect to see the Council of Europe pass the motion and conduct any real investigations.  Nor do I expect the Council of Europe to find that the H1N1 Pandemic was overblown.  Of course I have been wrong before.  

As for whether it was reasonably forseeable that the  "pandemic" would not be as harsh as predicted by public health authorities there were credible skeptics who questioned the pandemic rhetoric many months ago.  As with any questioning of vaccine related issues skeptics and critics of public health authorities' "consensus" on these issues were largely ignored, ridiculed or demonized.  

As for whether "drug makers" or pharmaceuticals have too  much influence over public health authority decisions concerning pandemics and other public health issues I will leave that question to someone truly knowledgeable on the subject ... someone like Dr. Julie Gerberding who led the CDC from 2002 to 2009 and who will now lead Merck's vaccine division:

 "WASHINGTON, Dec 21 (Reuters) - Dr. Julie Gerberding, former director of the U.S. Centers for Disease Control and Prevention, was named president of Merck & Co Inc's (MRK.N) vaccine division, the company said on Monday.... She may be charged with reigniting flagging sales of Merck's Gardasil vaccine to prevent cervical cancer by protecting against human papillomavirus or HPV. After an encouraging launch Gardasil sales have been falling and were down 22 percent in the third quarter at $311 million." [Bold emphasis added - HLD]

One thing I would like to see emerge from the H1N1 Pandemic, whether the Pandemic label was justified or not, are studies of the impact on the health, including any negative health  effects, if any, of the many people vaccinated with H1N1 shots.  In some countries adjuvants and other ingredients, including thimerosal, were included in the H1N1 shots.  

One of the high priority  target groups to receive H1N1 shots was pregnant women. Some credible public health authorities, including Dr. Bernadine Healy, have pointed out that thimerosal,  a mercury based preservative, crosses the placenta.  It would seem appropriate to me to keep data on the health effects of the H1N1 vaccine on  these women and the children who received the H1N1 shots in utero. 

It seems to this humble layperson that the developmental histories of children born during this time period from pregnant women who (1) did not receive the H1N1 shot (2) received the H1N1 shot without thimerosal, (3) received the H1N1 shot without adjuvants should be compared.   As someone with an interest in autism disorders and what causes them I am interested in particular in seeing a comparison of  autism rates 2+ years from now of children whose mothers were carrying them when they  received H1N1 shots containing thimerosal  and children whose mothers, while carrying them, received H1NH1 vaccine shots without thimerosal.

No I am not expecting such studies to be done and yes I do expect to be ignored, ridiculed or demonized for making these suggestions.  But I am making them anyway.

autism

Swine Flu Pandemic? Swine Flu Cases Falling Across the UK

"Across the UK the number of new cases of swine-flu are falling. Department of Health figures show that in the past week there were 5,000 infections in England - compared to over 100,000 at the start of the month."

BBC News, Friday, 28 August 2009 06:54 UK

Is this what the WHO and the CDC mean by a pandemic?

I am not trying to be glib about swine flu, or any influenza. I understand that the flu, swine, avian, or whatever variety of flu I contracted many times over the course of my life in Canada, can kill some people. Flu complications may bring my brief visit to this planet to an end some day but I have difficulty seeing why people around the world have been whipped into a panic over this specific flu, billions of dollars invested, testing of the safety and efficacy of vaccines rushed ... and possibly compromised ... based on available rate of infection and death information to date. And their previous track record at pandemic prediction ... the 1976 swine flu "pandemic" for example ... is not that great.

The figures below are taken from the Public Health Agency of Canada web site and indicate the number of people that have died from Swine Flu (H1N1) across Canada:

Every death is a tragedy for that person and those that know and love them. But the figures above, for an estimated population of 33,760,560 according to Statistics Canada's daily estimate, and like the UK information from the BBC above, are not what I think of when I think of a pandemic. The flu does kill significant numbers of people every year. In New Brunswick where I live we have been exposed to the Swine Flu already. A number of cadets visiting nearby Base Gagetown this summer contracted Swine Flu. They all survived. And New Brunswick has not, to date, recorded a single death, (yes, thankfully), but this humble, ignorant, non medical person has a hard time seeing the information to date as justifying the panic, the billions of dollars spent around the planet on vaccines, and their rush into production, with possible compromises to the safety and efficacy of the vaccines.

But what do I know. I am just a humble parent. And they are intelligent, well informed public health authorities who know better. If the WHO, the CDC and the Public Health Agency of Canada say there is a Swine Flu pandemic then I guess there must be a Swine Flu pandemic.

autism