HESA Committee Report

LIBERAL PARTY OF CANADA DISSENTING REPORT

Kirsty Duncan, Member of Parliament

Introduction

This dissenting report first thanks all the witnesses, many of whom were living with a neurological condition and many of whom were providing care, and for sharing often difficult information about their personal lives in order to provide a better quality of life for other Canadians. The report recognises their courage, their sense of ethics, fairness, and humanity.

Over time, brain conditions, such as amyotrophic lateral sclerosis (ALS), multiple sclerosis, Alzheimer's disease and Parkinson's disease, separate people from their work and society, as they are no longer able to leave home, and eventually from their family, as they are no longer able to communicate. Over time, they are systematically removed from everything they once knew, and they become one of the forgotten, hidden behind closed doors.

Tragically, this report falls far short of reflecting the voiceless, reflecting what was heard by the sub-committee and the committee, and whitewashes issues of tremendous importance to the 5.5 million Canadians, who live with a brain condition, and their families.

Witnesses came in good faith to testify, and expected that the report would honestly reflect their concerns, their needs, and the action and investments they needed their government to take. The report instead protects the status quo and recognizes and celebrates any action taken by the government; the report could have been so much more with real recommendations for families who are hurting, and direction that could have made Canada a leader. 

It was the job of the committee’s report to defend the voiceless, and to fight hard for their issues. It fails in its attempt, and therefore this dissenting report apologises to all those who took the time and effort to testify.

General

Before, identifying the serious flaws of the committee’s report, it is necessary to stress that there is currently no strategy for neurological conditions--either as part of the National Mental Health Strategy or as a standalone strategy: therefore the committee’s report should have been of the utmost importance.

Sadly, not all perspectives are to be found in the committee's report: for example, missing are the voices that asked for action, including a "Year of the Brain" and a "National Brain Strategy", voices that asked for investment, and voices that asked for income security. Yet the voice of the government, and all its good actions, take a disproportionate amount of space in the report.

Not all information is included, even when it is from reliable sources, such as Health Canada or the World Health Organization. In general, sections addressing caregiver supports, income security, privacy of genetic information, and research are watered down.

History is included when it is favourable to the government, and absent when it is not. While chronic cerebrospinal venous insufficiency (CCSVI) was examined by the sub-committee on neurological disease in May-June 2010, the history, such as the fact that internationally-renowned experts recommended clinical trials at that time is not included, until the government actually took action. And information is provided that does not match the actual facts--for example, “the expert working group had decided, following the analysis of the results of seven studies, sufficient evidence existed to support the establishment of phase one clinical trials”. This is a ridiculous statement, as it implies the seven studies were completed by June 2011, which is patently false. The Canadian Press reported on January 27^th, 2012 that, “the complete results will be available only after completion of all the studies, which will involve more than 1,300 people representing a spectrum of forms of MS, as well as individuals with other neurological diseases and healthy controls.” Clearly, all the studies were not completed a half a year later in January, 2012.

Other times in the report, only one side of the issue is presented; for example, the report highlights the importance of the government's MS monitoring system, but does not acknowledge that it was to begin in July, 2012, and now September 2012, 33 months after Canadians first began travelling overseas for treatment for CCSVI.

The government does not recognise the increasing numbers of neurological conditions, the human costs of brain conditions, and their associated economic costs. It is deeply concerning that the significant economic costs to families are not sufficiently recognised in the report, and, particularly the fact that many individuals and families live in poverty as a result of the brain condition with which they must contend: hence, ALS is known as the "bankruptcy disease". In fact, the report downplays the economic challenges people face.

More disturbing still is the fact that there are no recommendations to address income security, a problem which was brought up repeatedly by those living with a brain condition, their caregivers, and non-governmental organizations.

Finally, a real concern is the use of "consider" throughout the report. Despite the committee's hearing from stakeholders across the country, including academics, caregivers, patients, practitioners, etc., the government might still choose to delay action, or choose not to take any action at all.

Recommendations

Recommendation 1: That the government declare 2014 as the "Year of the Brain" in order to: draw political attention to the human and economic costs of brain disease, now and in the future; build international collaborations in education and science to enhance brain health across the world; and leave a lasting legacy in Canada of increased awareness and better understanding of brain health and disease, and improved diagnoses and treatments.

Recommendation 2: That the government develop a pan-Canadian brain strategy, including, an education and awareness campaign, a pan-Canadian brain injury prevention strategy, an integrated treatment and support program, genetic discrimination protection, poverty protection, caregiver support, and accelerated investment in neuroscience research.

Recommendation 3: That the government develop a pan-Canadian dementia strategy to address the rising tide of dementia.

Recommendation 4: That the government recognise that: phase ll and phase lll clinical trials for CCSVI are already taking place; phase l trials should be reconsidered; a scientific expert working group with expertise in diagnosis and treatment of CCSVI should be established; anyone who has a conflict of interest/perceived conflict of interest should step down from any expert working group; and follow-up care should be assured to anyone who has had the treatment for CCSVI.

Recommendation 5: That the government re-build trust with those living with MS, and develop a monitoring system in which they can put their faith.

Recommendation 6: That the government recognise the economic and social costs of care giving, make existing tax credits (e.g. caregiver tax credit, disability tax credit, and the family caregiver tax credit) refundable, and explore ways to reform income security programs.

Recommendation 7: That the government should recognise that genetic discrimination is a real issue, that it should review its existing legislation to determine whether it provides sufficient protection, and if not, it should ensure protection from discrimination.

Recommendation 8: That the government establish and fund a Centre of Excellence for Neurodegenerative conditions.

Recommendation 9: That the government provide transformative multi-investigator grants to accelerate research from discovery to the development of new treatments and therapies for neurological conditions, develop a coordinated pan-Canadian program to develop technology platforms in neurogenomics, neuroimaging, neuroproteomics, and disease models; and fund a pan-Canadian training program to nurture the next generation of neuroscientists, with stable funding.

Recommendation 10: That the government should: work in collaboration with the provinces and territories and all relevant stakeholders to establish a pan-Canadian comprehensive autism spectrum disorder (ASD) strategy to enable children, adolescents, and adults with ASD to lead full and meaningful lives, and  ensure the strategy is based on the best available evidence, and includes awareness and education campaigns, child, adolescent, and adult intervention and supports, innovative funding arrangements for the purpose of financing therapy, surveillance, respite care, community initiatives, and research.