From: Sandra Finley
I submitted the following letter to the Standing Committee on Health. Newcomers may be interested in what happened to the Childhood Cancer Surveillance Program at Health Canada (old-timers received the info earlier). It still troubles me greatly.
TO: Members of the Standing Committee on Health:
The Chair (Bonnie Brown (Oakville, Lib.)), James Lunney (Nanaimo-Alberni, CPC), Rob Merrifield (Yellowhead, CPC), Réal Ménard (Hochelaga, BQ), Robert Thibault (West Nova, Lib.), Jean Crowder (Nanaimo-Cowichan, NDP,) Ruby Dhalla (Brampton-Springdale, Lib.), Colin Carrie (Oshawa, CPC), Nicole Demers (Laval, BQ), Brenda Chamberlain (Guelph, Lib.).
CONCERNING: remark by Committee member Réal Ménard, May 19th, “I think that it almost warrants a public enquiry“.
MORE EVIDENCE OF NEED FOR AN ENQUIRY:
– HEALTH CANADA CUT FUNDING FOR THE CANADIAN CHILDHOOD CANCER SURVEILLANCE AND CONTROL PROGRAM (RESEARCH IN THE PUBLIC INTEREST TO ADDRESS CAUSE OF DISEASE), WHILE
– RE-DIRECTING PUBLIC MONEY TO THE HEALTH RESEARCH FOUNDATION (RESEARCH THAT “HAS THE POTENTIAL FOR COMMERCIALIZATION” BY THE PHARMACEUTICAL INDUSTRY, RESEARCH TO “CURE” DISEASE)
The research that is NOT funded is a condemnation of Health Canada. It says “it is okay to get the disease. There are interests who can make money curing you. We will send the tax dollars to them.” Research in the public interest, which is the role of Government, is gutted.
The Canadian Institute for Child Health (CICH) issued reports that the incidence of cancer in children has increased by 25% in 25 years. In that context, Health Canada cut funding for the Childhood Cancer Surveillance & Control Program.
How did this happen? An enquiry is needed to understand what is going on.
This is a very serious matter.
It is important to consider the story of the Childhood Cancer Surveillance Program IN THE LARGER CONTEXT OF HEALTH CANADA. I have appended a sampling of what I know. And in that context, here is our local experience. It tells you that an Enquiry into the operations of Health Canada is a pressing need.
OUR LOCAL EXPERIENCE
…. Visuals make an impact.
Here is the picture I spoke about – Tanya with several of her friends at a school fun night. (INSERT: there are 8 children in the photograph which was taken prior to diagnosis.) Three out of these 8 children were diagnosed with cancer. Two are now deceased. A 4th friend (not in the picture) was diagnosed this summer (2004). I have concealed the faces of all the children with the exception of my daughter to protect their privacy & that of their families.
… I will use the example of my own experience. My 15 year old daughter was diagnosed with rhabdomyosarcoma in 1997. In Aug. of ’98, just after my daughter had completed an extremely gruelling one year treatment protocol for her ‘mystery’ cancer, I received a request asking for my permission to release her medical files for use in a study. I was reluctant to do so without more information. Eventually I received more information from Judy Kosloski (the Provincial Study Co-ordinator located at Epidemiology, Prevention & Screening at 4101 Dewdney Ave in Regina Ph 306-766-2170).
I was told the principle investigator of the study was Marie Desmeules (613-957-0577).
(INSERT, May 17, 2018, Sandra speaking: Marie Desmeules was later impossible for Donna to track down. I googled on the off-chance today. I found this, maybe the same Marie Desmeules? http://www.goc411.ca/en/113443/Marie-DesMeules): Marie DesMeules works as Director for Public Health Agency of Canada. Marie can be reached at 613-952-3285)
The Canadian Childhood Cancer Surveillance and Control Program (CCCSCP) was announced in July 1992 by the Minister of the Federal Health Dept. The program was part of the government’s Brighter Futures initiative aimed at reducing risks to the health and normal development of children. Its goal was to contribute towards reducing the suffering and burden caused by childhood cancer. To accomplish this a nationwide information system on childhood cancer was established. One of the main objectives was to collect information on stage at diagnosis by age of the patient, geographic region & cancer site. Another was to estimate the economic costs.
From time to time I would make general inquiries into how the study was coming and receive vague replies. I have a newsletter that I received from CCCSCP in July of 2000. At this time the newsletter said ‘the overall goal of the etiology component of the CCCSCP was to establish a national, population-based database of childhood cancer cases and matched controls with detailed information on major putative risk factors. This database would be used to identify individuals or groups at high risk for developing cancer.
In Aug of 2000 I made a call to inquire how the study was coming. I spoke to Catherine Makris, a research analyst. The notes I made during our conversation say I was told that the principle investigator of the study, Marie Desmeules, had moved re job instability and was put on assignment somewhere else in women’s health. I was told that there was now zero funding for childhood cancer investigations because of Allan Rock’s budget. Things were no longer up to date but hey, they were doing their best. (As a side I made a note that a Howard Morrison was involved with a pesticide risk assessment study.)
(INSERT: May 17, 2018: Catherine Makris works as Senior Analyst for Public Health Agency of Canada.
Catherine can be reached at 613-796-3040 (http://www.goc411.ca/en/114504/Catherine-Makris)
My still unanswered questions & concerns are :
- Did the collection of this data actually cease in the year 2000 despite cancer being the number one disease killer of children in North America?
- Where is the raw data that has been collected?
- Is this a case of information being collected and nothing being done with it?
(I have been told by someone who did a research thesis on the topic that Ag Medicine at the U of S has damning evidence. So why is nothing done with it?)
- Was there a pesticide risk study completed that we are unaware of?
- Has any further work been done to estimate economic costs?
(and let’s not forget the psychological and emotional costs too – At Mcmaster in Hamilton I observed parents going from the pediatric department where their child was diagnosed, straight to the shrink department where parents were put on antidepressants and antianxiety drugs.) I myself spent a small fortune on ulcer medication and gavison.)
Most recently in writing to CCSCB this is the reply (Oct. 2004) I received:
Thank you for your inquiry. The Program you refer to, the Canadian Childhood Cancer Surveillance and Control Program (CCCSCP), is still in operation. However, due to decreased funding, the CCCSCP now functions at a level of intensity that is significantly lower than initially planned and implemented. Currently, the Program’s viability is directly at risk as only core salary costs have been secured. The newly formed Public Health Agency of Canada (formerly part of Health Canada) will continue efforts to work with provincial partners to secure long term viability for the Program.
Despite this, the Program has established a national network of experts which is responsive to fundamental surveillance needs within childhood cancer control. During this process, the Program has produced a number of information resources for a variety of consumers. I would be happy to send you some of these documents if you like.
So as one can see less and less money is going into determining why children in Canada get cancer. My observation is that we, as a society, really don’t want to know why because we will have to change our individual lifestyles. And we don’t want to interfere with economic profits. So we myopically focus our efforts and our hope on cures that large pharmaceutical companies are happy to offer.
(letter from CCCSCP) “Currently, the CCCSCP has no active data collection. Departmental funding in the future will be limited to a minimal operating budget and to salaried personnel who could continue to support data analysis. … work is underway, with provincial oncology centres and other partners, to examine other possible sources of funding. …”.
This approach is extremely problematic: the Health Research Foundation says that the research which will be pursued is that which has “potential for commercialization“. Anything that has to do with REMOVAL OF CAUSE does not have POTENTIAL FOR COMMERCIALIZATION. Research in the public interest no longer exists. As a tax-payer I am very angry that my dollars are sent to the pharmaceutical companies through the Health Research Foundations.
THE CONTEXT: FUNDING IS RE-DIRECTED FROM “PUBLIC INTEREST” TO “PRIVATE INTEREST”
Here is a little sampling, remembering that many pharmaceutical companies have large ownership stakes in the chemical companies:
(1) The Auditor Generals’ Department has consistently condemned the operations of the PMRA (Health Canada) in a series of 4 reports, beginning in 1988. Very little happens in response to the criticisms.
(2) Tests that should be part of the evaluation of pesticides are not part of the process, e.g. consideration of the existing body burden of chemicals, interactions between pesticides (exposure isn’t in isolation to one substance which is the premise of the existing evaluations), etc., etc.
(3) Our input to the Romanow Healthcare Review Commission (March 2002). There are very serious problems with some drugs registered for use in Canada, one example being Acutane. In late 2004, during the U.S. Government hearings into the VIOXX scandal the lead scientist, Dr. David Graham, went public on 5 drugs in addition to VIOXX, that are still on the market when they should not be because of the very serious side effects. Acutane is one.
(4) Health Canada is responsible for the safety of water in First Nations communities. In late summer 2004 there was television coverage of the situation at Saddle Lake in Alberta which is representative of other cases – failure to issue “boil water” advisories on badly contaminated water. (My guess is that too many boil water advisories reflect badly on performance reviews.)
(5) “The Three Scientists” who blew the whistle on attempted bribery by Monsanto to get bovine growth hormone registered in Canada, fired by “Health Canada”.
(6) When I objected to the “conflict-of-interest” of a scientist who works for the PMRA (responsible for the registration of chemicals) and who simultaneously works for the chemical industry (CropLife Canada IS the chemical/biotech industry) the Government scientist attempted to intimidate me into silence using a letter from a lawyer that threatened to sue me if I say such-and-such.
(7) A participant in the re-evaluation report for 2,4-D, presumeably hired by the PMRA is Dr. Keith Solomon. Earlier in his career he was hired by the tobacco industry to present “science” which showed that second-hand smoke is benign. He travelled from his home in Guelph, Ontario to attend a meeting of Regina City Council in Saskatchewan to present “science” to show that synthetic chemical pesticides are harmless. His science was, among other things, shown by scientists from the University of Regina to be reliant on studies that are 20 years out-of-date. This is the calibre of professionalism hired by the PMRA?? WHO was behind the appointment of Keith Solomon to the PMRA’s re-evaluation study on 2,4-D? That will tell you a lot.
(8) Regarding professionalism: the study of epigenetics is 20 years old and has been reported beginning at least in Aug 2003 (Wall Street Journal, New York Times, Scientific American), continuing in 2004 and in June 2005 (Time Magazine, Forbes Magazine, Seattle Post-Intelligencer, Washington State University News Service). “Recent information indicates that toxic effects on health can be inherited by children and grandchildren, even when there are no genetic mutations involved. These inherited changes are caused by subtle chemical influences, …”. Canadians expect the “authorities” at Health Canada to be abreast of new scientific knowledge and to apply it in the decisions they make that affect the health of the environment and consequently, of Canadian citizens. It is what they are paid to do. There is no evidence to suggest that Health Canada recognizes the Precautionary Principle. Why don’t they? A professional whose knowledge is current (use the example of epigenetics) would most certainly embrace the PP.
The issue is health – PREVENTION of disease, the humane approach. The provincial premiers and many health organizations are promoting public money for PHARMACARE, “It’s okay to get the disease, we’ll cure you”, an inhumane and expensive approach – a boon for the chemical/pharmaceutical complex – access to more public money.
David Suzuki’s recent show is timely. The “Nature of Things” (Sept 30 and Oct 3/04), re pharmaceutical companies: “Selling Sickness” “explores the unhealthy relationships between society, medical science and the pharmaceutical industry as they promote their new miracle cures – selling not just drugs but also the latest diseases that go with them. It looks at the growing global controversy around SSRI antidepressants and follows British Psychiatrist, Dr David Healy, patients and their families as they rock the scientific establishment with accusations that aggressive drug marketing is blurring the boundaries between medical conditions and ordinary life with potentially deadly consequences.”
“advertising corrodes science”.
13/08/2004 we circulated information re ANGELL MARCIA, former New England Journal of Medicine editor, now senior lecturer at Harvard Medical School and her book “The Truth About the Drug Companies: How They Deceive Us and What to Do About It” (Random House, 2004).
Doctors and scientists are lobbying to require that pharmaceutical companies must register all research into their products at the time the research commences. And the results must then be reported. Currently, if there are 4 negative test results and one positive, the pharmaceutical/chemical companies will only report the one positive test (which could be a manipulated test done by a scientist who is on their payroll).
In “Selling Sickness” David Suzuki uses the drug Paxil to demonstrate how the industry manufactures “disease” (e.g. “social anxiety disorder”). They “brand” a “condition” and then use advertising and conferences for doctors, to create the flow-through demand for their drug. It is very insidious.
The health costs to the unsuspecting patient are sometimes very high. In the case of Paxil, healthy kids going through normal teenage anxieties committed suicide. Other people become addicted to a high-cost drug. Can’t get off it, or have terrible withdrawal if they attempt to get off. The documentary contains footage from the US FDA inquiry into public experience with drugs like Paxil and Zoloft.
That the Government is a collaborator with and provides public money to these corporations is not to be tolerated.
SUMMARY, to date, items sent to the Standing Committee on Health:
- Re Bill C-28, Interim Marketing Authorizations (for Committee Meeting on May 5th)
Following May 19th testimony by “the 3 scientists” who were fired, and in support of need for an Enquiry:
- Re Health Canada scientist who simultaneously works for chemical/biotech industry and attempted intimidation to silence citizen protest, submitted June 4th, “My experience reinforces what the scientists are telling you”
- Two biotechnology events, submitted June 7th (failure to issue entry visas to scientists who support UN Biosafety Protocol and instructions to Canadian negotiators at UN Bangkok meetings to sabotage consensus on terminator technology – connections to Health Canada through biotechnology agenda of its “clients”.)
- (today’s submission – hopefully the last I will make!) Health Canada cuts funding for research that is in public interest while sending tax dollars to fund research that is in private interest (“has potential for commercialization“)