HESA Committee Report

Supplementary Opinion of the New Democratic Party of Canada

Libby Davies, NDP, Vancouver East; Djaouida Sellah, NDP, Saint-Bruno - Saint Hubert; Dany Morin, NDP, Chicoutimi-Le Fjord; and Matthew Kellway, NDP, Beaches-East York.

Neurological Diseases in Canada

The New Democrat Members of the Standing Committee on Health are concerned that the final report on Focusing on the Brain: An Examination of Neurological Diseases in Canada, does not reflect the depth of ideas shared by witnesses who testified before the Committee—particularly  testimony on the challenges of neurological diseases and suggestions for strategies to better support persons living with neurological diseases and their families.  With approximately one million Canadians currently affected by neurological disease, its prevalence means these diseases pose significant social and economic costs to Canada. 

We are very concerned that the Committee’s report excuses the lack of federal leadership on this issue and minimizes the federal role.  Witnesses identified the federal government as having an important role to play in expanding research on neurological diseases, launching education programs, providing enhanced benefit programs to persons living with neurological diseases and their caregivers,and providing funding to improve and expand treatment options.  The New Democrat members of the Committee understand the importance of federal action on this issue, and put forward this report to recommend actions the federal government can take to address the impacts of neurological diseases in Canada. 

Research and Education

In order to improve the surveillance of neurological diseases in Canada, witnesses made several suggestions concerning how the federal government could increase funding for research on neurological diseases and their treatments to help improve quality of life.  The Committee also heard how the federal government could increase awareness and education of these diseases and their impacts on Canadians. 

Witnesses described that only about 20% of grant applications to the Canadian Institutes of Health Research (CIHR) were successful because of CIHR’s limited budget.  This means high quality neurological research proposals cannot always be financed.  Witnesses identified 3 areas where more research funding is needed.  First, the Committee heard that additional grants were needed to offset the costs of running laboratories.  Second, there is also a need for funding mechanisms that promote multidisciplinary research to explore the diverse factors contributing to neurological diseases.  Third, CIHR could reduce the administrative burden of applications by reducing their page requirements for applications, as well as providing longer term grants to limit the number of times researchers have to apply for funding and to provide stable funding.

Witnesses also suggested that the federal government could increase CIHR’s overall budget by 1% of total health care costs, as recommended in the Senate Committee on Social Affairs, Science, and Technology’s 2002 report The Health of Canadians: the Federal Role.  In addition, witnesses suggested that through the Network of Centres of Excellence Program, the federal government could fund the establishment of a Centre of Excellence for Neurological Diseases that would coordinate multi-disciplinary research into specific neurological degenerative diseases such as Alzheimer’s Disease, Parkinson’s Disease, and Multiple Sclerosis.  Witnesses suggested that more funding could be provided if CIHR increased the number of team grants available, which has been substantially reduced in recent years.  Additional grants could also be provided for training, particularly to train younger researchers.  Finally, witnesses suggested that a $10 million per year investment over the next 5-10 years in a Centre for Neurological Diseases would also help prevent the projected increasing financial burden that is expected to be posed by degenerative neurological conditions over the next 2 decades. 

The Committee heard that the federal government could establish a four-year National Population Health Study on Neurological Conditions that will look at, among other things: the incidence, prevalence, and co-morbidities of neurological conditions.

Witnesses also discussed the need for further research on the treatment of cerebrospinal venous insufficiency syndrome (CCSVI) as a treatment for Multiple Sclerosis.  They noted that a lack of access to treatment of CCSVI in Canada meant that many Canadians have travelled to clinics abroad to receive the procedure.  Health Canada was encouraged to conduct clinical trials as quickly as possible. 

The Committee heard that witnesses encouraged the federal government to raise the profile of neurological diseases in Canada, to draw attention to their prevalence and the need for further research and treatment options.  Witnesses suggested the Public Health Agency of Canada could establish a public awareness program to inform Canadians about neurological diseases.  To help raise awareness about neurological diseases, the federal government could also declare 2014 ‘The Year of the Brain’, as the Public Health Agency of Canada’s National Population Health Study on Neurological Diseases is expected to be completed then. 

The Social and Economic Costs of Neurological Diseases

Witnesses estimated, based on the data in Health Canada’s Economic Burden of Illness in Canada 1998 and the Economic Burden of Mental Health Problems in Canada 2001 studies, as well as the World Health Organization’s The Global Burden of Disease 1990 study, that the economic burden of neurological and psychiatric diseases, disorders, and injuries represents 14% of the total cost of illness in Canada.  This figure includes both the direct costs to the health care system as a result of these conditions, as well as indirect costs from the loss of productivity due to disability.  Witnesses also suggested that the economic burden of these illnesses would increase with the age of Canada’s population, as many neurodegenerative diseases have an onset between the ages of 40-65 years.

The Committee also heard that the federal government could be doing more to support the caregivers of persons living with neurological diseases.  Witnesses suggested that the federal government should create a more flexible employment insurance benefit program for persons with episodic diseases, chronic illnesses, or disabilities, so that recipients are able to retain their employment.  Witnesses also recommended that existing regulations be amended so that people could work part-time while receiving partial benefits.  While persons with disabilities can currently work part-time and receive employment insurance sickness benefits, they are limited to 25% of their salary or $50 per week, which is a disincentive to gainful employment.

Witnesses also encouraged the federal government to introduce a refundable Disability Tax Credit for low-income Canadians.  The Subcommittee heard that many families of persons with neurological diseases did not generate enough taxable income to benefit from the existing Disability Tax Credit.  Making this credit refundable would mean that anyone with a severe and prolonged disability would be eligible to receive the benefit regardless of their level of income.  Finally, the Committee heard that the federal government should streamline its application processes for the Disability Tax Credit and Canada Pension Plan Disability benefits, to make it easier for persons with physical and/or cognitive impairments to apply for them.

Witnesses also told the Committee that the federal government could do more to support informal caregivers, including allowing a more flexible Compassionate Care Benefit Program.  The current program only provides six weeks of benefits in a six-month period, but witnesses encouraged that an adjusted program allow for partial weeks over a longer period of time.  They also asked for amendments to the Caregiver Amount Tax Credit, which currently only applies to spouses or partners in the workforce or who pay income tax.  Witnesses suggested that all spouses and partners should be able to claim this benefit.  The Committee heard that to improve income security issues for both persons with neurological diseases and their caregivers, the federal government could establish an Advisory Committee on Income Reform that would explore options for income security programs for persons with disabilities and their caregivers. 

Witnesses gave further suggestions to improve the quality of life for persons living with neurological diseases.  Canada ranks 26^th out of 29 OECD countries for public health plan reimbursement of neurological and psychiatric medications and many Canadians with neurological diseases face out-of-pocket expenses for medications for innovative treatments or once they have reached their ceiling coverage with employer insurance plans.  Thus, some witnesses called for the establishment of a pan-Canadian prescription drug coverage plan.  A pan-Canadian plan would provide Canadians access to drugs at a more affordable cost.  However, the NDP acknowledges, as noted in the 2004 Health Accord, the jurisdiction of the Government of Québec over its healthcare system and that Québec already has its own program in place.

The Committee heard from witnesses that palliative care was not just for persons who were immediately dying, but for all persons with diseases that experience long-term suffering.  They articulated that palliative care was a model of care for all people who live with progressive life-limiting illnesses.  Witnesses suggested palliative care professionals could be introduced into multidisciplinary neurological disease care teams, and that greater investments be made to allow persons with neurological disease to access palliative care options rather than long-term care.

Witnesses also described concerns about discrimination when applying for various types of insurance, and that the sharing of genetic information about neurological diseases could influence their applications.  Now that genetic information is available for neurological diseases, insurance companies can request information from applicants and then share it through a medical information bureau.  Witnesses called on the federal government to create legislation to protect Canadians from genetic discrimination, and noted that this legislation would be necessary to ensure Canadians benefitted from CIHR’s new personalized medicine initiative. 

NDP Recommendations

1.    We urge the federal government to declare 2014 as ‘The Year of the Brain’.

2.    We urge the federal government to increase the Canadian Institutes of Health Research’s budget to 1% of health costs, as recommended in the Senate Committee on Social Affairs, Science, and Technology’s 2002 report The Health of Canadians: the Federal Role.

3.    We urge the Minister of Health to ask the Canadian Institutes of Health Research to examine ways to streamline and reduce the administrative workload that their grant applications place on researchers and provide multi-year grants to researchers.

4.    We urge the federal government to explore ways through the Minister of Finance and the Minister Human Resources and Skills Development, to reform income security programs and tax benefits for persons with disabilities and their caregivers.

5.    We urge the federal government to establish an Advisory Committee on Income Reform to explore options for better income security for persons with disabilities.

6.    We urge the federal government to make existing tax credits, such as the Disability Tax Credit, the Caregiver Tax Credit, and the Family Caregiver Tax Credit, refundable in order for them to be of greater benefit to low-income Canadians; and that the application for such benefits be streamlined and applications made more accessible for those with physical and/or cognitive disabilities.

7.    We urge the federal government to amend the Compassionate Care Benefit program to provide more flexibility, including: coverage of partial weeks over extended periods of time and increasing the benefit to a maximum of 52 weeks within the last year of life.

8.    We urge the federal government to revise the Compassionate Care Benefit eligibility criteria for persons with a terminal illness, changing the criteria from ‘significant risk of death’ to ‘significant need of caregiving because of fatal illness’.

9.    We urge the Minister of Health and the federal government to work with their provincial and territorial counterparts to create a universal prescription drug plan, to provide all Canadians with access to affordable medications.

10. We urge the Minister of Health to direct the Canadian Institutes of Health Research and Genome Canada to work with relevant stakeholders to develop guidelines for health professionals in the use and sharing of genetic information.

11. We urge the Minister of Health and federal government to play a leadership role in working with provincial and territorial partners for better access to drugs, treatments, care, and supports for neurological diseases.

Conclusion

There is a clear federal role to improve treatments and supports for Canadians living with neurological diseases and their caregivers.  Witnesses highlighted areas where the federal government could take action to improve the quality of life for those living with neurological diseases, including: research and surveillance; income security; caregiver supports; the privacy of genetic information; and awareness.  This Committee’s study also revealed that greater efforts were needed to promote clinical trial research that would lead to a more timely introduction of innovative treatments and drugs for neurological diseases in the Canadian health care system. 

We are concerned by the lack of coherence in the policies of the Conservative government.  On one hand, the Conservatives want to control the costs of health care, but at the same time they refuse to invest now in research and prevention that would result in long term savings. We need now, more than ever, a coherent plan and action from the federal government in health care to ensure that Canadians will be healthier and can be treated effectively when necessary.   The New Democratic Party, in accordance with the testimony heard from witnesses at the Standing Committee on Health, urges the federal government to take action to improve the quality of life of those suffering from neurological diseases in Canada today.