Focussing on the Brain: An Examination of Neurological Diseases in Canada

Introduction

On March 26, 2009, the House of Commons Standing Committee on Health (hereafter the Committee) passed a motion to establish a Subcommittee on Neurological Diseases (hereafter the Subcommittee) to examine neurological diseases in Canada.[1] Once established, the Subcommittee agreed that its study would focus on: fostering research on the causes, prevention, diagnosis and treatment of neurological diseases; examining ways in which to make treatment patient-driven and patient-focused; identifying achievable targets in the prevention and diagnosis of neurodegenerative diseases; easing the challenges facing caregivers and the families of those with neurological disease; and collecting and disseminating research information related to neurological diseases. It further agreed that the study would focus on five specific neurological diseases, including: Autism Spectrum Disorder (ASD), Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Parkinson’s Disease (PD) and Alzheimer’s Disease (AD). In total, the Subcommittee held eleven hearings and heard from 55 witnesses, including: researchers, neurological charities, individuals living with neurological diseases and their caregivers, and government officials. On March 26, 2011, the Subcommittee on Neurological Diseases was dissolved due to the 41st  General Election in May 2011.

On December 14, 2011 and February 7, 2012, the House of Commons Standing Committee on Health agreed to update the study originally undertaken by the Subcommittee on Neurological Diseases and report on its findings. It held an additional three hearings ending in May 2012 and heard from a total of 17 witnesses.

This report summarizes testimony from hearings held by both the Committee and the Subcommittee and where possible, updates have been provided to ensure the accuracy of the report. The report also identifies areas in which the federal government could take further action to address neurological diseases in Canada. The report is structured to reflect the three broad themes that emerged throughout the course of study, including: focusing on the brain as a whole; fostering neurological research in Canada; and improving the quality of life of those with neurological diseases and their families. The first chapter presents an overview of neurological diseases in Canada and highlights the views of witnesses regarding the need for a shift in perspective from targeting individual neurological diseases separately to focussing on the common needs and challenges inherent to  neurological diseases as a whole. The second chapter examines different ways in which neurological research could be promoted in Canada. Finally, chapter three highlights key factors affecting the quality of life of those suffering from neurological diseases and their families, including: income security issues; the social and economic costs of care giving; access to drugs, treatments, care, and supports; social stigma; and genetic discrimination. This chapter aims to capture the voices and stories of the patients and caregivers who presented before the Committee, as well as provide recommendations responding to their concerns. Finally, it is important to note that the particular needs and challenges related to each of the five diseases selected for the study are highlighted within the context of these broader chapters.

Chapter 2: Promoting Neurological Research and Surveillance In Canada

A.  Overview of the Neurological Research Landscape in Canada

We have good research infrastructure all across Canada. We now have access to new technologies, new molecular tools that were not previously available. So it is the perfect time to invest in health research to continue being world leaders in health research and neurological diseases in particular, as the Canadian population is growing old, and adult onset diseases are increasing.[67]

The Committee and Subcommittee heard that the federal government was investing in neurological research primarily through the Canadian Institutes of Health Research (CIHR) and the Public Health Agency of Canada (PHAC). According to witnesses, CIHR represents the major source of public funding for health research in Canada with a budget of $980.8 million in 2010-2011.[68] The Committee heard that since its inception in 2000, CIHR had invested $1.1 billion in neuroscience research and spends approximately $120 million a year on neuroscience research through various programs and initiatives.[69] For example, the Subcommittee heard that Alzheimer’s disease was a research priority for CIHR and therefore, it was investing more than $30 million per year in investigator-initiated grants, salary awards, and targeted team grants in this area.[70] In addition, the Subcommittee heard that CIHR was also funding the Canadian longitudinal study on aging to provide information on why some people are able to age well, while others do not age well and develop Alzheimer’s disease. Finally, the Subcommittee and the Committee heard that CIHR was investing $25 million to develop an international collaborative research strategy for Alzheimer’s disease that would focus on prevention, early diagnosis and early treatment of Alzheimer’s disease.[71] The Subcommittee and the Committee heard that as part of this initiative, CIHR had established partnerships with the Alzheimer Society of Canada, the Quebec Network for Research on Aging funded by the Fonds de la recherche en santé du Québec (FRSQ), and with France, the United Kingdom, Germany, Italy, Ireland, Belgium, China and the United States. The Subcommittee also heard that CIHR was investing $45 million in MS research, as it was also considered a priority because Canada was facing one of the highest rates of MS in the world with three people in Canada being diagnosed with the disease per day.[72]

One researcher testified before the Subcommittee that he had received a number of offers from research labs in the United States and Europe. However, thanks in part to an initiative by ALS Canada, which together with CIHR, had set up a post-doctoral bursary program called the Tim E. Noël Fellowship in ALS Research, the researcher decided to stay in Canada in order to devote his research to ALS and to the various pathophysiological mechanisms involved in this disease.[73]

The Committee also heard that CIHR investments were leading to new treatments for Parkinson’s Disease.[74] For example, the Committee heard from CIHR-funded researcher Dr. Bin Hu, who had developed an innovative tool called a “gait reminder” that uses music cues to help people with Parkinson’s Disease improve their walking movements. This new device computes leg movements and reminds individuals through musical cues to take large steps to remain stable, which in turn prevents falls and prolongs the functional mobility of individuals living with Parkinson’s Disease.

In addition, the Committee heard that CIHR had supported clinical studies examining the beneficial effect of deep brain stimulation surgery for the treatment of motor features of Parkinson’s Disease, including motor fluctuations and involuntary movements.[75] The Committee heard that this six-hour brain surgery was reducing the amount of medication required by Parkinson’s patients that could be quite costly, ranging from $20,000 to $25, 000 a year.[76] Indeed, the Committee heard directly from a recipient of deep brain stimulation surgery that the surgery had greatly improved his motor function.[77] The success of his surgery led him to conclude that, “Canada is a leader in both pure research and bedside research. At the Toronto Western Hospital, where I had my surgery, there were doctors and post-docs from literally all over the world – China, South America, Asia, Europe – coming to study at that facility to see the latest in surgical intervention techniques.”[78] The Committee heard that there were many patients that could benefit from this treatment, but its availability was currently limited due to its costs, as brain stimulators could cost up to $25 000.[79] Some witnesses, therefore, noted that as this beneficial treatment became more mainstream, it would represent a significant cost to health care systems.[80]

In addition to specific initiatives aimed at neurological diseases, the Committee heard that CIHR had several more general initiatives that would benefit neurological research, including its $67.5 million investment in personalized medicine in partnership with Genome Canada, which would be matched by private and provincial partners for a total investment of $135 million. According to CIHR officials, this initiative seeks to understand the genetic prevalence and signatures of diseases in order to offer treatments that are targeted to a person’s individual genetic code.[81] According to CHIR President Dr. Alain Beaudet, “this major investment will help us offer new diagnostic and therapeutic approaches for a variety of disorders, including neurodegenerative diseases (...) Personalized medicine is also very useful in the drug industry. Once randomized treatment trials are carried out, only groups of people that can respond to the treatments being tested will be targeted. The Government of Canada hopes that this will enable it to conduct randomized treatment trials on fewer patients and that it will not have to submit patients to treatments that they are unlikely to respond to. In the case of neurological diseases, it is often not a matter of specific diseases, but syndromes that, presumably, cover various genetic identities.”[82]

In addition, Dr. Alain Beaudet explained that, “to better understand the interaction between genetic and environmental factors in the development of neurological diseases, CIHR has recently launched a Canadian epigenetics, environment, and health research consortium. We hope this initiative will help us develop better prevention and treatment programs, and rapidly translate epigenetic discoveries into new diagnostic procedures.”[83]

In order to improve access to innovative treatments for different diseases and conditions, the Subcommittee also heard that CIHR had developed a strategy in 2009 for patient-oriented research, which focuses on providing funding for research that is necessary to support the introduction of new treatments into health care systems across Canada in a manner that is both safe and cost-effective.[84] This includes funding along a continuum from initial studies examining the effectiveness of a drug or treatment in humans, to examinations of new diagnostic procedures and finally, clinical trials evaluating the effectiveness of new treatments or procedures in comparison to existing ones. This information can then be used by clinicians and policy makers to evaluate whether new treatments should be introduced into the health care system.

The Subcommittee also heard about the role of PHAC in promoting research and surveillance of neurological diseases in Canada.[85] Health surveillance is an ongoing core public health function, and it is a critical part of the work done at PHAC. Surveillance is ongoing and includes a systematic process of data collection, expert analysis and interpretation; and most importantly, communication of the resulting information for public health action. The information used may include rates of a health condition; emerging trends overtime; variations in the occurrence of a health condition according to specific populations or geography; where these populations live; information about risk; and protective factors. With surveillance information, governments, health care providers, public health practitioners, researchers and Canadians can take action to prevent disease and promote health. The responses may be in the form of policy and program development, changes in clinical or public health practices, the provision of advice and education to the public or research. There is a broad range of uses for the surveillance information provided by PHAC and the organization is very careful to collect that information to meet the needs.

 The Committee heard that the federal government had established the Canadian MS Monitoring System that was currently being developed by the Canadian Institutes for Health Information (CIHI) in collaboration with the provinces and territories, the Canadian Network of MS Clinics and the MS Society of Canada.[86] The aim of the monitoring system is to collect data on MS, including monitoring the outcomes of various treatments and the quality of life of those with the disease.[87] According to Ms. Kim Elmslie, Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada:

The new monitoring system will help make good information available on the treatment of MS for Canadians who live with this devastating disease. It will compile data from multiple independent data systems across the country. It will provide a standardized way of collecting those data, and will create a national data system on MS, its treatment, and information on the quality of life of those living with this disease. Over the longer term, this system will monitor patient outcomes and help identify the most effective therapies in the treatment of MS. The information gathered and distributed through the monitoring system will help health information gathered and distributed through the monitoring system will heal health professionals identify future needs and plan resources to ensure that those diagnosed with MS have access to the care they need.[88]

While witnesses recognized the importance of these new surveillance initiatives, they also felt it was necessary that the Committee recommend that neurological conditions be added to the existing Canadian Chronic Disease Surveillance System.[89]

Finally, the Subcommittee also heard that PHAC was in the process of developing an autism surveillance program that may eventually be used to monitor the prevalence of other neurodevelopmental conditions.[90] The aim of this surveillance system is to address the lack of complete and reliable epidemiological data on ASDs in Canada.[91] As part of the development of its surveillance system, the Subcommittee heard that PHAC was working with Queen’s University to develop and test surveillance methodologies for ASD. In addition, the Subcommittee also heard that PHAC was in the process of establishing a scientific advisory committee that would be responsible for developing common definitions and indicators, as well as best practices in data collection that would serve as the basis of the autism surveillance system. The Agency expected that the work of this scientific advisory committee would begin early in the 2011-12 fiscal year. The Committee notes that the Autism Surveillance Advisory Committee has been established for a two-year period and held its first meeting in March 2012. This expert committee is made up of researchers, clinicians, surveillance experts and autism organizations.

In addition to federal research and surveillance initiatives, the Subcommittee and the Committee heard that neurological charities were playing an important role in funding and promoting neurological research in Canada. The Committee heard that neurological charities invest between $20 million to $25 million per year on neuroscience research.[92] For example, the primary mandate of ALS Canada was to fund research in support of greater knowledge of the disease and its treatment.[93] Through its budget of $2 million, ALS Canada funds operating grants for senior scientists, and has established clinical research fellowship programs, as well as a clinical trials network for ALS. Similarly, the Subcommittee heard that Autism Speaks Canada had contributed over $142.5 million to global autism research initiatives through 2014, while Parkinson Society Canada was investing $4.2 million to fund Canadian investigators in basic clinical and psychosocial research for Parkinson’s Disease.[94] Finally, the Subcommittee heard that the Multiple Sclerosis Society of Canada had funded $120 million in health research, an amount that was growing by approximately $10 million per year.[95]

The Subcommittee heard that neurological charities also play an important role in promoting innovations in neurological research. For example, Brain Canada, a national, non-profit foundation dedicated to supporting research into new diagnostics, treatments and cures for brain disorders, in partnership with CIHR, communities and voluntary health organizations, had developed a series of grants for multi-disciplinary, multi-institutional pilot studies focusing on common mechanisms of brain disorders.[96] The Subcommittee heard that this pilot program, called the Brain Repair Program, had proved to be a successful model in translating research findings into better clinical practice in relation to the diagnosis and treatment of brain disorders. Similarly, ALS Canada was able to develop a clinical trial network for ALS research that addressed the challenges associated with conducting clinical trials for diseases that affected a small proportion of the Canadian population.[97] This could serve as a model for other rare diseases. The Subcommittee also heard that neurological charities, such as ALS Canada, were able to provide grants for investigators exploring new avenues of research that may not otherwise be funded through traditional public funding agencies.

The Committee heard that the federal government was also supporting research investments made by neurological charities through the development of a public-private partnership with Brain Canada called the Canada Brain Research Fund.[98] The federal government is investing $100 million in the Canadian Brain Research Fund, monies that would be matched by Brain Canada and its partners. The Committee heard that these funds would be invested in a three-pronged research program that would include: multi-disciplinary team grants modelled on the brain repair program; training fellowships to develop the next generation of researchers; and operational support for national technology platforms in neuroimaging, neurogenomics, neuroproteomics, and disease models.[99] The Committee heard that the aim of the Canada Brain Research Fund was to focus research investment on the brain as one complex system, rather than a collection of diseases, and promote private investment in this area.[100]

In addition to these investments, the Committee learned that, “in 2011 in Brussels, CIHR and their European Union counterparts implemented an international initiative of over $50 million to address traumatic brain injury. In addition to that initiative, efforts are being invested nationally to advance research in this area. As part of those efforts, the Ontario Neurotrauma Foundation and the Hotchkiss Brain Institute recently joined CIHR in order to develop a Canadian national initiative on traumatic brain injury.”[101]

B.  Neurological Research in Canada

(i)  Research Funding

Though many witnesses stressed the importance of CIHR’s existing research initiatives, they also articulated that more funding for neurological research was necessary. For example, the Subcommittee heard that of the total grant applications received by CIHR, between 15% and 20% were successful.[102] Researchers noted that this success rate was higher than that of other jurisdictions, explaining that the success rate of grant applications at the United States’ National Institute on Aging was much lower at 4%.[103] However, researchers noted that despite this high success rate relative to other jurisdictions, other excellent research applications remained unfunded due to funding limitations within CIHR.[104] Dr. Rémi Quirion, Executive Director of the International Collaborative Research Strategy for Alzheimer’s Disease, Canadian Institutes for Health Research, noted that “there are maybe 10% of grants that are not funded that should be funded.”[105]

The Subcommittee also heard that CIHR was currently investing $179 million in operating grants for research, which includes mental health, addiction and the sensory organs, while the voluntary organizations, the ones organized under the Neurological Health Charities combined, were only able to disburse an additional $20,000 per year.[106] For some witnesses, this was seen as not enough to meet the current and future costs of neurological diseases in Canada.[107] Furthermore, the Subcommittee heard that increased investments in neurological disease research were necessary because they could also reduce the future costs associated with these diseases. For example, Alzheimer’s prevention research could result in reducing costs of treating the disease by delaying its onset by two years. This in turn would reduce the overall cost of treating the disease by half over the next 30 years, resulting in a savings of almost $400 billion.[108]

Witnesses further identified specific areas where more research funding was needed. First, the Subcommittee heard that researchers required more operating grants to offset the costs of running their labs.[109] Second, witnesses said there was a need for funding mechanisms that promote the multidisciplinary research necessary to address the many different facets of neurological diseases.[110] Finally, the Committee heard from witnesses that the federal government could fund the establishment of a “Centre of Excellence for Neurological Diseases,” through its Networks of Centres of Excellence Program, that would bring together different disciplines to conduct research into specific neurological degenerative diseases such as Alzheimer’s Disease, Parkinson’s Disease, or Multiple Sclerosis.[111]

(ii)  Administrative Challenges of Grant Applications

The Subcommittee heard that researchers must spend a considerable amount of time completing numerous comprehensive grant applications from different research organizations in order to have their studies funded. To be able to run a lab and be internationally competitive, researchers need to secure as many as five different grants.[112] Witnesses articulated that CIHR could reduce the administrative burden required for their application process by reducing the page number requirement for its grant applications.[113] The Subcommittee heard that the Alzheimer’s Society of Canada only requires a five-page application. In addition, witnesses articulated that CIHR could offer more multi-year grants to reduce the frequency with which researchers needed to apply for more funding, as well as provide greater stability to their research efforts.[114] The Subcommittee heard that offering three- to five-year grants were preferable to one-year grants.[115]

(iii)  Access to Clinical Trials for New Drugs and Treatments

The Subcommittee heard that people with neurological diseases in Canada had difficulty gaining timely access to new and innovative drugs and treatments for their diseases because of difficulties gaining access to clinical trials evaluating those drugs and treatments. For example, MS patients are unable to gain access to a treatment for chronic cerebrospinal venous insufficiency syndrome (CCSVI), a condition characterized by flow blockages of the internal jugular and azygous veins system which results in insufficient drainage from the brain.[116] The Subcommittee heard from witnesses with MS that due to the progressive nature of their disease, it was of vital importance for them to gain early access to this new possibly effective treatment.[117]

The Subcommittee heard that CIHR was addressing these concerns by establishing a scientific expert working group made up of researchers, members of Canadian, U.S. and Italian MS societies, provincial and territorial representatives and experts from CIHR that would undertake a systematic review of the of the evidence regarding CCSVI and MS, including the association between venous abnormalities and MS, and the benefits and harms of endovascular treatment.[118] The Subcommittee heard that based upon the results of this systematic review, the working group would then decide if funding should be provided for a clinical trial that would evaluate the safety and efficacy of endovascular treatment.

In an update presented to the Committee in March 2012, CIHR officials articulated that the expert working group had decided, following the analysis of the results of seven studies, that sufficient evidence existed to support the establishment of phase one clinical trials that would examine the safety of endovascular treatment for CCSVI in persons with MS and a phase two clinical trial that would examine its efficacy.[119] The Committee heard that an applicant for the CCSVI clinical trial had been selected on April 18, 2012 and that the trial would commence, once an ethics review had been completed by university and hospital ethics boards.[120]

The Committee heard that funding for the clinical trials would be provided by CIHR and the MS Society of Canada. The Committee heard from witnesses that the Canadian MS Monitoring System would also monitor the outcomes of those Canadians who had travelled abroad to receive endovascular treatment for CCSVI.[121] In addition, the Committee heard from witnesses that provincial governments were conducting studies examining the impact of the treatment of those who had received treatment abroad, while others were offering programs and supports. For example, the Government of Ontario is developing guidelines for physicians to help provide follow-up treatment for patients who had endovascular treatment abroad, while the Government of New Brunswick set up a program to assist with the costs associated with having the procedure.[122] In addition, the Government of Saskatchewan is partnering with the Albany Medical Centre with Dr. Siskin to undertake clinical trials.

In addition to the example of treatment for CCSVI and MS, the Subcommittee heard that few clinical trials for new drugs for rarer neurological diseases, such as ALS, were being conducted in Canada.[123] Large pharmaceutical companies are unwilling to fund large clinical trials for diseases such as ALS because it only represents a small market for potential new drugs, while smaller biotech companies researching ALS do not have the funds to conduct large enough clinical trials. For these reasons, the ALS Society of Canada had focused on establishing and funding clinical trial networks in Canada to promote the examination of new drugs and treatments for the disease. One witness suggested that this gap could also be addressed by the Government of Canada playing an intermediary role by matching researchers making preliminary discoveries in university labs with biotech companies looking to invest, a model that has been developed in the United Kingdom.[124]

The Subcommittee also heard that Alzheimer’s research focusing on drugs that could prevent then onset of the disease required longer clinical trials in the range of seven to ten years.[125] Longer clinical trials are inhibited by the Patent Act, as the patents currently available under the Act would expire during the course of a longer clinical trial. This is a deterrent to pharmaceutical companies, who want to conduct longer clinical trials in Canada. Consequently, witnesses recommended that the Government of Canada consider amending the Patent Act to promote long-term clinical trials in Canada focusing on the prevention of Alzheimer’s disease.

C.  Committee Observations and Recommendations

The Committee heard that significant investments are being made in neurological research in Canada by the federal government in partnership with neurological charities and provincial governments.[126] The Committee also learned from government officials that surveillance data for neurological diseases would improve due to PHAC’s National Population Health Study of Neurological Conditions and the ongoing development of its new autism surveillance program.[127] The Study will provide a clear picture of the state of neurological conditions in Canada, and will help governments and stakeholders plan programs and health services for Canadians living with these conditions, and identify the scope for prevention.[128] However, witnesses felt that there was still a need to add neurological conditions to the existing Canadian Chronic Disease Surveillance System. The Committee heard that research investments should focus on promoting multi-disciplinary research through the establishment of larger team grants and centres of excellence that bring different disciplines together to research and treat neurological diseases.[129] The Subcommittee heard that CIHR could cut red tape by reducing the number of pages requirements for their applications and provide longer term grants to limit the number of times researchers have to apply for funding.[130] The Committee believes that some of these research needs will now be met by the recent establishment of the $100 million Canadian Brain Research Fund that will provide multi-disciplinary neuroscience research and training grants, as well as operational support for researchers. According to witnesses, the establishment of a new Centre of Excellence for Neurodegenerative Diseases through the federal government’s Networks of Centres of Excellence Program could also support research in this area.[131] This could serve to complement the existing Centre for Excellence for Neuro-developmental disorders in children, known as Neurodevnet.[132]

With regards to access to clinical trials, the Subcommittee heard that CIHR was trying to improve access to clinical trial research in Canada through its new patient-oriented research strategy.[133] According to CIHR President, Dr. Alain Beaudet,
“This strategy for patient-oriented research is built on the principle that there is a growing need to conduct intervention studies in order to address important clinical issues as is the case with the clinical trials on MS. These studies involve large numbers of patients who are receiving health care services in many settings across the country. The result from such trials provides the basis for clinical practices providing accurate patient diagnosis, prognosis and treatment.”[134]

The Committee therefore recommends that:

3.            CIHR consider developing more strategic initiatives related to neurological research;

4.            PHAC continue to build its autism surveillance program to eventually include all neurodevelopmental diseases affecting children as it evolves;

5.            PHAC include neurological conditions within its Canadian Chronic Disease Surveillance System;

6.            The Government of Canada consider establishing a Centre of Excellence for Neurodegenerative conditions through its Networks of Centres of Excellence Program;

7.            CIHR consider examining ways to streamline and reduce the administrative workload that their grant applications place
on researchers;

8.            CIHR continue to update the House of Commons Standing Committee on Health regarding the findings of its scientific expert working group regarding Multiple Sclerosis and chronic cerebrospinal venous insufficiency syndrome, including the results of future clinical trials;

9.            CIHR update the House of Commons Standing Committee on Health as to how their patient-oriented research strategy will address access to clinical trials in Canada, as well as whether this strategy will reflect consultations regarding patient’s views on research in Canada.

[1]              The exact motion establishing the Subcommittee was as follows: “That the Health Committee should strike a subcommittee or have a conference to examine the burden of neurological disease in Canada; explore the results of clinical trials and experimental technologies, which are yielding positive results here in Canada and internationally; and investigate the possibility of bringing successful therapies to Canada,” the Committee, Minutes of Proceedings, March 26, 2009, http://www2.parl.gc.ca/HousePublications/Publication.aspx?DocId=3781153&Language=E&Mode=1&Parl=40&Ses=2.

[2]              Medline Plus, National Institutes of Health, “Neurological Diseases,” http://www.nlm.nih.gov/medlineplus/neurologicdiseases.html.

[3]              World Health Organization, “Neurological Disorders: Public Health Challenges,” http://www.who.int/ mental_health/neurology/neurological_disorders_report_web.pdf, p.29.

[4]              National Institute of Neurological Disorders and Stroke, ”Brain Basics: Know Your Brain”, http://www.ninds.nih.gov/disorders/brain_basics/know_your_brain.htm#disorders.

[5]              Ibid.

[6]              World Health Organization, “Neurological Disorders: Public Health Challenges,” http://www.who.int/ mental_health/neurology/neurological_disorders_report_web.pdf, p.177.

[7]              Kim Elmslie, Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention, Public Health Agency of Canada (PHAC), Evidence, March 1, 2012.

[8]              Ibid.; Neuroscience Canada, “The Case for Canada’s Increased Investment in Neuroscience Research,” March 15, 2006, p. 2 brief submitted to the Subcommittee in November 2010.

[9].             Kim Elmslie, Evidence, March 1, 2012.

[10]           Ibid.

[11]           Ibid.

[12]           Unless otherwise noted, economic consequences include both the direct costs of diseases to the health care system and indirect costs, which include the decline in productivity of those with these diseases. Canadian Institute for Health Information, The Burden of Neurological Diseases, Disorders and Injuries in Canada, 2007, http://secure.cihi.ca/cihiweb/products/BND_e.pdf.

[13]           Unless otherwise noted, this information is based upon the following: Autism Society Canada, “What are Autism Spectrum Disorders?” http://www.autismsocietycanada.ca/DocsAndMedia/ASC_Internal/info_ASCwhatisautisminfosheet_27_June_07_e.pdf.

[14]           Unless otherwise noted, this section is based upon the following document: Canadian Institute for Health Information, The Burden of Neurological Diseases, Disorders and Injuries in Canada, 2007, http://secure.cihi.ca/cihiweb/products/BND_e.pdf, p. 73.

[15].          Ibid.

[16]           The Multiple Sclerosis Society of Canada, “What is MS,” http://mssociety.ca/en/information/ms_what.htm.

[17]           Unless otherwise noted, this section is drawn from a brief submitted to the Subcommittee by the Amyotrophic Lateral Sclerosis Society of Canada on October 31, 2010.

[18]           Canadian Institute for Health Information, The Burden of Neurological Diseases, Disorders and Injuries in Canada, 2007, http://secure.cihi.ca/cihiweb/products/BND_e.pdf, p. 28.

[19]           Ibid, p. 83.

[20]           A biomarker is a substance whose detection indicates a particular disease state. For example, the presence of an antibody may indicate an infection. More specifically, a biomarker indicates a change in expression or state of a protein that correlates with the risk or progression of a disease, or with the susceptibility of the disease to a given treatment. For further information see, Newsmedical “What is a biomarker?” http://www.news-medical.net/health/Biomarker-What-is-a-Biomarker.aspx.

[21]           C. Warren Olanow, MD, “A Colonic Biomarker of Parkinson’s Disease?” Movement Disorders, vol. 27, no. 6, pp.674-676.

[22]           Ibid.

[23]           Canadian Institute for Health Information, The Burden of Neurological Diseases, Disorders and Injuries in Canada, 2007, http://secure.cihi.ca/cihiweb/products/BND_e.pdf p. 19.

[24]           Debbie Bencskowski, Interim Chief Executive Officer, Alzheimer’s Society of Canada, Evidence, December 7, 2010.

[25]           Alzheimer Society of Canada, “Rising Tide: The Impact of Dementia on Canadian Society,” 2010, http://www.alzheimer.ca/en/Get-involved/Raise-your-voice/~/media/Files/national/Advocacy/ASC_Rising%20Tide_Full%20Report_Eng.ashx.

[26]           Kim Elmslie, Evidence, December 14, 2010.

[27]           Service Canada, “Services for People with Disabilities,” http://www.servicecanada.gc.ca/ eng/audiences/disabilities/index.shtml.

[28]           Marlisa Tiedemann, “The Federal Role in Health and Health Care,” Library of Parliament, PRB 08-58E, October 20, 2008, http://lpintrabp.parl.gc.ca/lopimages2/prbpubs/bp1000/prb0858-e.asp.

[29]           Health Canada, “Canada Health Act Annual Report: 2009-2010,” http://www.hc-sc.gc.ca/hcs-sss/alt_formats/pdf/pubs/cha-ics/2010-cha-ics-ar-ra-eng.pdf, p.3.

[30]           Ibid.

[31]           Ibid, p.159.

[32]           Ibid, p.161.

[33]           Marlisa Tiedemann, “The Federal Role in Health and Health Care,” Library of Parliament, PRB 08-58E, October 20, 2008, http://lpintrabp.parl.gc.ca/lopimages2/prbpubs/bp1000/prb0858-e.asp.

[34].          It is important to note that due to study constraints, federal government programs and services and the specific impact of neurological diseases on these population groups were not a specific focus of the Committee’s study and little testimony was received on this issue.

[35]           Health Canada, “Drug Products,” http://www.hc-sc.gc.ca/dhp-mps/prodpharma/index-eng.php.

[36]           Ibid.

[37]           Health Canada, “Drugs and Health Products: Special Access to Drugs and Health Products,” July 12, 2005, http://www.hc-sc.gc.ca/dhp-mps/acces/index-eng.php.

[38]           Karin Phillips, “Catastrophic Drug Coverage in Canada,” Library of Parliament Publication, September 1, 2009, http://www.parl.gc.ca/Content/LOP/ResearchPublications/prb0906-e.htm#a2.

[39]           Neuroscience Canada, Evidence, November 30, 2010.

[40]           Dr. Peter Rosenbaum Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and dissemination, McMaster University, CanChild Centre for Childhood Disability Research, Evidence, December 14, 2010.

[41]           Dr. Denise Figlewicz, Vice-President, Research, Amyotrophic Lateral Sclerosis Society of Canada and Dr. Alex Parker, Assistant Professor, Research Centre of the University of Montreal Hospital Centre, Department of Pathology and Cell Biology, Université de Montréal, Evidence, June 8, 2010.

[42]           Inez Jabalpurwala, President, Neuroscience Canada, Dr. Weihong Song, as an Individual, and Dr. Rémi Quirion, Canadian Institutes of Health Research, Evidence, November 30, 2010.

[43]           Ibid.

[44]           Derek Walton, Member of Advocacy Committee, Amyotrophic Lateral Sclerosis Society of Canada, Evidence, May 1, 2012.

[45]           Deborah Benzckowski, Evidence, December 7, 2010.

[46]           Dr. Peter Rosenbaum and Dr. Laurent Mottron, Professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d’excellence en troubles envahissants du développement, Université de Montréal, the Subcommittee, Evidence, December 14, 2010.

[47]           Ibid.

[48]           Joyce Gordon, President and Chief Executive Officer, Parkinson’s Society of Canada, Evidence, November 16, 2010.

[49]           Dr. Peter Rosenbaum and Dr. Laurent Mottron, Evidence, December 14, 2010.

[50]           Neurological Health Charities of Canada, Evidence, March 1, 2012, and December 7, 2012, ALS Society of Canada, Evidence, November 2, 2010, Alzheimer Society of Canada, Evidence, December 7, 2012, Parkinson’s Society Canada, Evidence, November 16, 2010 and April 26, 2012, Brain Canada Foundation, Evidence, March 1, 2012.

[51]           Ibid.

[52]           Ibid.

[53]           Daniel Krewski, Professor and Director, R. Samuel McLaughlin Centre for Population Health Risk Assessment, Institute of Population Health, The University of Ottawa, Evidence, May 1, 2012.

[54]           Kim Elmslie, Evidence, March 1, 2012.

[55]           Ibid.

[56]           Ibid.

[57]           Dr. Garth M. Bray, Chair, Scientific Advisory Committee, Neurological Health Charities Canada, Evidence, May 1, 2012.

[58]           Daniel Krewski, Evidence, April 26, 2012, David Cameron, President and Chief Executive Officer, Amyotrophic Lateral Sclerosis Society of Canada, Evidence, November 2, 2010, Vanessa Foran, Neurological Health Charities of Canada, Evidence, March 1, 2012.

[59]           Ibid.

[60]           Ibid.

[61]           Kim Elmslie, Evidence, May 1, 2012.

[62]           Joyce Gordon, Evidence, March 1, 2012.

[63]           Neurological Health Charities of Canada, Evidence, March 1, 2012, December 7, 2012, ALS Society of Canada, Evidence, November 2, 2010, Alzheimer Society of Canada, Evidence, December 7, 2012, Parkinson’s Society Canada, Evidence, November 16, 2010 and April 26, 2012, Brain Canada Foundation, Evidence, March 1, 2012.

[64]           Neurological Health Charities of Canada, Evidence, March 1, 2012, December 7, 2012, ALS Society of Canada, Evidence, November 2, 2010, Alzheimer Society of Canada, Evidence, December 7, 2012, Parkinson’s Society Canada, Evidence, November 16, 2010 and April 26, 2012, Brain Canada Foundation, Evidence, March 1, 2012.

[65]           Kim Elmslie, Evidence, March 1, 2012.

[66]           Ibid.

[67]           François Gros-Louis, Assistant Professor, Amyotrophic Lateral Sclerosis Society of Canada, Evidence, November 2, 2010.

[68]           Amyotrophic Lateral Sclerosis Society of Canada, “ALS Society of Canada-Brief to the Subcommittee on Neurological Disease,” June 8, 2010.

[69]           Dr. Alain Beaudet, President, Canadian Institutes of Health Research (CIHR), Evidence,” March 1, 2012.

[70]           Dr. Rémi Quirion, Evidence, November 30, 2010.

[71]           Ibid.

[72]           Dr. Alain Beaudet, Evidence, June 15, 2010.

[73]           François Gros-Louis, Evidence, November 2, 2010.

[74]           Dr. Alain Beaudet and Dr. Bin Hu, Professor, Department of Clinical Neurosciences, University of Calgary, as an Individual, Evidence, April 26, 2012.

[75]           Dr. Alain Beaudet, Evidence, March 1, 2012.

[76]           David Simmons, as an Individual, Evidence, April 26, 2012.

[77]           Ibid.

[78]           Ibid.

[79]           Dr. Edward Fon, Director, McGill Parkinson Program and National Parkinson Foundation Centre of Excellence. Montreal Neurological Institute, McGill University, Evidence, April 26, 2012.

[80]           Ibid.

[81]           Dr. Alain Beaudet, Evidence, March 1, 2012.

[82]           Ibid.

[83]           Ibid.

[84]           Dr. Alain Beaudet, Evidence, June 15, 2010.

[85]           Kim Elmslie, Evidence, December 14, 2010.

[86]           Deanna Groetzinger, Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada, Evidence, May 1, 2012.

[87]           Kim Elmslie, Evidence, March 1, 2012.

[88]           Ibid.

[89]           Dr. Garth M. Bray, Chair Evidence, May 1, 2012 and Joyce Gordon, Evidence, April 26, 2012.

[90]           Kim Elmslie, Evidence, December 14, 2010.

[91]           Ibid.

[92]           Dr. David Kaplan, Brain Foundation Canada, Evidence, March 1, 2012.

[93]           Denise Figlewicz, Evidence, June 8, 2010.

[94]           Suzanne Lanthier, Executive Director, Autism Speaks Canada, Evidence, December 9, 2010 and Joyce Gordon, Evidence, November 16, 2010.

[95]           Yves Savoie, President and Chief Executive Officer, Multiple Sclerosis Society of Canada, Evidence,
 May 6, 2010.

[96]           Inez Jabalpurwala, Evidence, November 30, 2010.

[97]           Dr. Denise Figlewicz, Evidence, June 8, 2010.

[98]           Inez Jabalpurwala, Evidence, March 1, 2012.

[99]           Ibid.

[100]         Ibid.

[101]         Dr. Alain Beaudet, Evidence, March 1, 2012.

[102]         Dr. Rémi Quirion, Evidence, November 30, 2010 and Dr. Jon Stoessl, Professor, Head of Neurology, Director, Parkinson’s Research Centre, Canada Research Chair in Parkinson’s Disease, the Subcommittee, Evidence, Number 012, 3rd Session, 40th Parliament, November 16, 2010.

[103]         Dr. Rémi Quirion, Evidence, November 30, 2010.

[104]         Ibid.

[105]         Ibid.

[106]         Inez Jabalpurwala, Evidence, November 30, 2010.

[107]         Ibid.

[108]         Dr. Weihong Song, as an Individual, Evidence, November 30, 2010.

[109]         Neuroscience Canada, Evidence, November 30, 2010, Dr. Alex Parker, Evidence, June 15, 2010, and Francois Gros-Louis, Evidence, November 2, 2010.

[110]         Neurological Health Charities of Canada, Evidence, November 30, 2010.

[111]         Dr. Rémi Quirion, Dr. Weihong Song, Jack Brown and Family Professorship, University of British Columbia, Evidence, November 30, 2010, and Dr. Jon A Stoessl, Evidence, November 16, 2010, Dr. Michael Schlossmacher, Scientist, Neuroscience, Ottawa Hospital Research Institute, Evidence, November 16, 2010.

[112]         Dr. Rémi Quirion, Evidence, November 30, 2010.

[113]         Dr. Jack Diamond, Scientific Director, Alzheimer Society of Canada, Evidence, December 7, 2010.

[114]         Inez Jabalpurwala, Evidence, November 30, 2010.

[115]         Ibid.

[116]         Rebecca Conney, Co-founder MS Liberation, Janet Salloum, as an Individual, Evidence, May 11, 2010, Laura Radley, as an Individual, Evidence, May 5, 2010, Lianne Web, as an Individual and Steven Garvie, as an Individual, Evidence, June 1, 2010.

[117]         Ibid.

[118]         Dr. Alain Beaudet, Evidence, December 7, 2010.

[119]         Dr. Alain Beaudet, Evidence, March 1, 2012.

[120]         Deanna Groetzinger, Evidence, May 1, 2012.

[121]         Ibid.

[122]         Ibid.

[123]         Dr. Denise Figlewicz, Evidence, June 8, 2010.

[124]         Ibid.

[125]         Mark Ferdinand, Vice-President, Policy, Canada’s Research-Based Pharmaceutical Companies and Mr. Serge Gautier, as an Individual, Evidence, November 30, 2010.

[126]         Dr. Alain Beaudet, Evidence, March 1, 2012.

[127]         Ibid.

[128]         PHAC, “National Population Health Study of Neurological Conditions Program Overview,” http://www.phac-aspc.gc.ca/cd-mc/nc-mn/201001/1-eng.php.

[129]         Dr. Rémi Quirion, Dr. Weihong Song, Jack Brown and Family Professorship, Evidence, November 30, 2010, and Dr. Jon A Stoessl, Evidence, November 16, 2010, Dr. Michael Schlossmacher, Evidence, November 16, 2010.

[130]          Dr. Jack Diamond, Evidence, December 7, 2010.

[131]         Dr. Rémi Quirion, Dr. Weihong Song, Jack Brown and Family Professorship, Evidence, November 30, 2010, and Dr. Jon A Stoessl, Evidence, November 16, 2010, Dr. Michael Schlossmacher, Evidence, November 16, 2010.

[132]         Neurodevnet, “Neurodevnet,” http://www.neurodevnet.ca/.

[133]         Dr. Alain Beaudet, President, CIHR, June 15, 2010.

[134]         Ibid.

[135]         Unless otherwise noted, the information summarized in this paragraph is based upon the following testimony: Denis Baribeau, Quebec Division, Multiple Sclerosis Society of Canada and Joan Ozirny, Alberta Division, Multiple Sclerosis Society of Canada, Evidence, May 6, 2010, and David Simmonds, as an Individual, Joyce Gordon, Evidence, April 26, 2012, Vanessa Foran, NHCC, Evidence, March 1, 2012, and Derek Walton, and Marie Vaillant, Multiple Sclerosis Society of Canada, Evidence, May 1, 2012.

[136]         Ibid.

[137]         Dr. Robert Lester, Evidence, December 7, 2010.

[138]         Nigel Van Loan, Board Member, Amyotrophic Lateral Sclerosis Society of Canada, Evidence, November 2, 2010.

[139]         Suzanne Jacobson, QuickStart-Early Intervention for Autism, Evidence, December 14, 2010.

[140]         Greg McGinnis, as an Individual, Evidence, November 16, 2010.

[141]         Dr. Robert Lester, as an Individual, Evidence, December 7, 2010.

[142]         Debbie Benczkowski and Shannon MacDonald, Director, Policy and Partnerships, Neurological Health Charities Canada, Evidence, December 7, 2010.

[143]         Mark Ferdinand, Evidence, November 30, 2010.

[144]         Greg McGinnis, as an Individual, Evidence, November 16, 2010.

[145]         Kathleen A. Provost, Executive Director, Autism Society Canada, Evidence, December 9, 2010.

[146]         Dr. Peter Rosenbaum, Evidence, December 14, 2010.

[147]         Dennis Lendrum, Coffee Chat, Evidence, December 14, 2010 and Kathleen A. Provost, Evidence, December 9, 2010.

[148]         Dr. Denise Figlewicz, Evidence, June 8, 2010.

[149]         Nigel Van Loan, Evidence, November 2, 2010.

[150]         Ibid.

[151]         Ibid.

[152]         Chris Sherwood, Evidence, November 23, 2010.

[153]         Joyce Gordon, Evidence, November 16, 2010.

[154]         Vanessa Foran, Evidence, March 1, 2012.

[155]         Ibid.

[156]         Ibid.

[157]         Chris Sherwood, Evidence, November 23, 2010.

[158]         Government of Canada, “Jobs, Growth and Long Term Prosperity: Economic Action Plan 2012, http://www.budget.gc.ca/2012/plan/pdf/Plan2012-eng.pdf.