Evidence of meeting #41 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

  • Derek Walton  Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
  • Galit Kleiner-Fisman  Neurologist and Movement Disorders Specialist, Baycrest Hospital
  • Deanna Groetzinger  Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
  • Marie Vaillant  Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada
  • Garth M. Bray  Chair, Scientific Advisory Committee, Neurological Health Charities Canada
  • Ian McDowell  Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

9:25 a.m.

NDP

Djaouida Sellah Saint-Bruno—Saint-Hubert, QC

The translator sounds as though she's talking very quickly, so she needs to slow down.

9:25 a.m.

Conservative

The Chair Joy Smith

Are we going too quickly? Okay.

9:25 a.m.

Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada

Marie Vaillant

I will slow it down.

9:25 a.m.

Conservative

The Chair Joy Smith

Could you slow down a little bit?

Thank you, Dr. Sellah. I was so involved in this paper that I didn't notice.

Okay, if you could slow it down a little bit, that would be great. Thank you.

9:25 a.m.

Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada

Marie Vaillant

Many more people living with MS and other episodic disabilities and neurological conditions could remain at or return to work if greater assistance were provided. The result would be the retention of experienced employees and less cost to society as a whole.

In my own case, I was diagnosed in 1996 with primary progressive multiple sclerosis while working as a manager with Bell Canada. My director was very understanding and accommodated my needs by allowing me to telework one day a week. In 2002 my MS had progressed and my neurologist suggested I no longer work. Because of my 25 years of service, I qualified for short-term disability for one year at full salary, and then I went on long-term disability. I now receive two-thirds of my salary as a combination of CPP, disability benefits, and employer-paid disability benefits.

Leaving the workforce was one of the hardest things I've ever done. Giving up a fulfilling career in my prime resulted in a period of depression and the need to reinvent myself. This I was able to do through my volunteer work with the MS Society.

I'm quite aware that my scenario is the exception and not the rule for many people living with MS who do not have the benefit of income security. The MS Society believes it is important to tackle the issue in two ways.

First, for people living with MS and other neurological conditions who can no longer work, there is an urgent need to develop a basic income plan for Canadians with severe disabilities. The Caledon Institute of Social Policy has done some excellent work on an innovative approach involving federal, provincial, and territorial governments.

We realize this could take time to put in place, and therefore we suggest there are some relatively easy steps that can be taken right now. These include making employment insurance sickness benefits more flexible, so people who do some work while in the midst of a relapse could choose to work part-time and receive partial benefits.

Currently individuals who qualify for EI sickness benefits receive them for 15 weeks, which equals 75 days. By allowing people to receive benefits for 150 half-days instead of 75 days, people with MS or other conditions would be able to maintain a strong attachment to their jobs and receive adequate income even when they take time off. Employers would pay a lower salary during the benefit period but still retain the services of an experienced employee. There would be no additional cost to EI.

The MS Society also recommends making existing tax credits—such as the disability tax credit, the caregiver tax credit, and the new family caregiver tax credit—refundable. This would put money in the pockets of low-income Canadians.

We are very grateful to the government for the creation of the family caregiver tax credit, since it recognizes the vital contribution spouses make as caregivers. It would be even more valuable as a refundable credit.

Madam Chair and committee members, as a person with MS, I can assure you we want to work. We want to do our part in contributing to Canada. We just need some assistance to help us do just that.

I'd now like to turn the presentation over to Deanna Groetzinger.

9:30 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Thank you.

I'll provide a quick update about progress that has been made in determining the relationship between CCSVI and MS.

First, The MS Society is very grateful to the Government of Canada and to all parliamentarians for making CCSVI and MS a health priority. People living with MS need answers they can use to make decisions about their own health. It is heartening to have your support.

On April 18 the Minister of Health announced that there was a fundable applicant for the CCSVI clinical trial. We are anxious for the clinical trial to begin as quickly as possible but understand the need for ethics review by university and hospital ethics boards. The MS Society is looking forward to helping fund the clinical trial as a partner with CIHR once there is final approval. The clinical trial announcement was just one of a number of positive developments to help people with MS obtain the answers that they need. For example, the Government of Saskatchewan has worked with the Albany Medical Center to enable about 86 people with MS to participate in a clinical trial right now. In March, the first group of participants travelled to Albany, New York. This agreement followed an unsuccessful clinical trial process in Saskatchewan last year.

In December 2011, British Columbia launched a CCSVI registry that will follow people who have had the CCSVI procedure outside of Canada. These registrants will be followed for three years to see what happens. In Alberta, the Alberta MS Initiative has been established to learn, through an observational study, about the range of experiences and outcomes following treatment of CCSVI. This is now ongoing. At the federal level, the Canadian Institute for Health Information, with funding from the Public Health Agency of Canada, is developing a nationwide system to measure and monitor MS progression and the impact of treatment, including CCSVI.

The MS Society continues to ask all governments to ensure that Canadians who undergo treatment for CCSVI outside of Canada have access to necessary post-treatment and follow-up care when they return home. We're pleased that most provincial governments have responded positively. In Ontario the government established an expert committee to develop detailed guidelines for physicians to help them treat patients who have had the CCSVI procedure. The Government of New Brunswick chose a different approach. It set up a program to assist people with the cost of having the CCSVI procedure, offering one-time matching grants of up to $2,500.

In 2009 the MS Society became the first organization in the world to issue a request for research proposals to investigate the relationship between CCSVI and MS. We were joined by our sister organization in the U.S., and we were able to fund seven research projects totaling more than $2.4 million to investigate the possible association of CCSVI and MS.

Funding for the projects began in July 2010 and at the 18-month mark the research teams say they are making good progress. More than 800 people have undergone scanning with various imaging techniques, including the Doppler ultrasound technology used by Dr. Zamboni and his collaborators as well as magnetic resonance studies of the veins, catheter venography, MRI scans of the brain, and clinical measures. More details about the project and the progress researchers are making can be found at our website, CCSVI.ca.

With that, we will conclude our remarks. We look forward to any questions the committee members may have.

Thank you.

9:35 a.m.

Conservative

The Chair Joy Smith

Thank you.

I must say, Ms. Vaillant and Ms. Groetzinger, your input into this committee has been very helpful this morning. Thank you for doing that.

I will now go to Neurological Health Charities Canada. Are you sharing your time, Dr. Bray and Dr. McDowell?

May 1st, 2012 / 9:35 a.m.

Dr. Garth M. Bray Chair, Scientific Advisory Committee, Neurological Health Charities Canada

Unfortunately for Dr. McDowell, I'm doing it all.

9:35 a.m.

Conservative

The Chair Joy Smith

He says rah-rah to that.

9:35 a.m.

Chair, Scientific Advisory Committee, Neurological Health Charities Canada

Dr. Garth M. Bray

But he's going to answer the questions.

9:35 a.m.

Conservative

The Chair Joy Smith

We look forward to hearing from you, Dr. Bray.

9:35 a.m.

Chair, Scientific Advisory Committee, Neurological Health Charities Canada

Dr. Garth M. Bray

Thank you.

Madam Chair and honourable members of the committee, thank you for this opportunity to discuss the national population health study of neurological conditions, which will be referred to as “the study“ for the remainder of this presentation. This presentation will be an overview from the perspective of the scientific advisory committee, the nine-member committee created by the implementation committee after the study was launched. Dr. McDowell and I are members of that committee. Dr. McDowell is a professor of epidemiology at the University of Ottawa. I was a clinical neurologist and laboratory researcher at McGill University and the Montreal General before my retirement.

In at least two previous sessions you've heard from other speakers about Neurological Health Charities Canada and quite a bit about the study. For example, on March 1 Vanessa Foran told you about the history of Neurological Health Charities Canada, known as NHCC, and the genesis of the study. At your April 26 discussion on Parkinson's disease, you heard from Dr. Daniel Krewski, who is a principal investigator on one of the projects of this study. You also heard from Joyce Gordon, who is president and CEO of the Parkinson's Society of Canada, but who is also president of the NHCC and is a member of the study's implementation committee, as is Deanna Groetzinger, who has just spoken.

As Vanessa explained in her March 1 presentation, the study is a collaboration involving a group of neurological health charities, the Public Health Agency of Canada, and researchers in academic centres across the country. Thirteen individual projects, three national surveys, and a micro simulation study are the components of this study, whose broad objectives are to determine as precisely as possible the numbers of Canadians who suffer from neurologic conditions, and to enumerate the impact of these neurologic conditions on the daily lives of the affected individuals, their caregivers, and the broader health care system.

Over the next few minutes my aim is to give you an overview of the anticipated collective outcomes of the various components of this large study.

Eight of the projects in the two surveys will contribute current data on the epidemiology of up to 18 conditions that cause neurologic disabilities in the overall Canadian population. In other words, these projects will assess prevalence, incidence, and co-morbidities. In addition, data from some of the projects will relate to specific subgroups of Canadians: first nations peoples, the elderly, and children.

A second group of projects addresses risk factors. Data on risk factors and the factors that influence disease progression are being analyzed in four other projects of the study. The outcomes of these projects will be important for the prevention and amelioration of disabilities due to the targeted neurologic conditions. The impact of neurological conditions on the daily activities, independence, emotional state, and financial situation of affected individuals is being studied in four of the projects and one of the national surveys. Because neurologic disabilities also have an impact on the lives of caregivers, families, friends, and communities, estimates of such broader effects are viewed as an important additional outcome of the study.

Six projects in both surveys will provide measures of health services utilization, including its availability, gaps in care delivery, and the identification of novel ways of providing appropriate care for persons with neurologic conditions.

The study also has three other potential outcomes that have broader implications. First, new sources of epidemiological data are being developed. For example, two projects are testing the feasibility and validity of using the electronic medical records of primary care physicians as sources of data for surveillance and other epidemiological studies.

Two other projects will develop recommendations on the use of registries for ongoing surveillance of neurologic conditions. These projects are evaluating inventories of existing registries and developing guidelines for the creation of new ones.

A final product of the study will be the micro simulation model. It will combine data from the various projects with projections of population growth and age to predict the future demands on health care services due to neurologic conditions and to indicate the most cost-effective way to deliver these services.

In conclusion, we would like to thank the Government of Canada for its commitment to and support of the national population health study of neurological conditions. To ensure the legacy of the study continues, we hope this committee will recognize the importance—as others have suggested—of adding neurologic conditions to the already functioning Canadian chronic disease surveillance system, and we hope that you will make such a recommendation in your report on these hearings.

Dr. McDowell and I look forward to your comments and questions.

Thank you.

9:40 a.m.

Conservative

The Chair Joy Smith

It has been an extremely great morning, with a lot of very insightful information that's very useful to all of us.

We'll now begin our round of Qs and As. This is our first round, which is for seven minutes.

We'll begin with Ms. Davies, please.

9:40 a.m.

NDP

Libby Davies Vancouver East, BC

Thank you very much, Chairperson.

First of all, to the witnesses and to Mr. Walton on video conference, welcome to the committee today. I think you're all aware that the previous committee in the former Parliament did a lot of work on this, so we're catching up. Having you here today and hearing more testimony is actually very helpful to the study we're doing.

I think we've gone from the broad issues that Dr. Bray has just put forward to some very specific issues.

I wanted to say as a general comment, first of all, that for those of you who have talked about the need for greater supports for caregivers for people with MS and other neurological diseases, I do think that's really important. It keeps coming up, just so you know. Whatever issue we look at in terms of chronic diseases and conditions, it keeps coming up. So clearly, there's a lot more work that needs to be done. I hope very much that will be a part of our report: the need for—as I think you put it, Ms. Vaillant—refundable tax credits.

I know the situation is really tough for people who have lost their employment because of their medical situation, so it's a huge issue, which the federal government can directly assist with. That's not going to be my question, but I wanted you to know that we've heard everything you're saying.

The questions I have focus more on where we're at with the CCSVI. We've all been visited by constituents, by MS sufferers. I have, on many occasions, and I have a couple of things on that. It's fascinating to me to see how the system responded when information about this treatment first came out, whether it was the MS Society, the government itself, or the medical community overall. We do know that the clinical trials are going to begin, so I have a couple of questions.

First of all, are you satisfied that the trials are happening quickly enough? There seem to be so many...I don't want to call them delays, but it's taking so much time. I know that there has been a great impetus to have this move more quickly.

I'm a layperson, but I do have the sense that there has been so much happening in the U.S. MP Kirsty Duncan organized a great session a few months ago at which we had some incredible experts from the U.S. It seemed that there was a lot more happening there in terms of the CCSVI treatment.

So I do have a question about why it took so long in terms of the response here, and, looking back, how you feel about that now. How has the MS Society itself dealt with this issue? Because I know it was quite divisive. There were people who went out and formed their own sorts of networks and so on.

So I do think it's worth exploring this, because to me this was very much a patient-led movement, if you will. It almost became a movement—maybe it is a movement—that compelled us to get on it. I don't think we had ever seen that to such an extent before, at least in my experience, but I haven't been on the health committee very long.

I'd really like both of you to respond to that—and the other witnesses as well—in terms of what's happening in the U.S. and whether Canada is now behind that, and whether you're satisfied with what is contemplated now, both for the trials in Canada and for the monitoring system that's being set up.

I hope that's clear enough for you to answer.

9:45 a.m.

Conservative

The Chair Joy Smith

Who would like to begin with that?