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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

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

I'd like to start the meeting so we have the time we need.

I would like to welcome to our committee, from the ALS Society of Canada, by video conference, Mr. Derek Walton.

Mr. Walton, can you hear me?

9:05 a.m.

Derek Walton Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada

Yes, I can, Joy.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

I'm so glad you could join us.

Mr. Walton, as soon as I introduce the rest of the witnesses, we're going to begin with you. Are you prepared for that?

9:05 a.m.

Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada

Derek Walton

Yes, and thank you.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you.

Also with us is Dr. Galit Kleiner-Fisman. Welcome, and congratulations on your brand-new baby.

This lady has just had a new baby, and she's here.

You thought I didn't know that. It was a month ago, wasn't it?

9:05 a.m.

Dr. Galit Kleiner-Fisman Neurologist and Movement Disorders Specialist, Baycrest Hospital

Exactly.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

Being a mother of six children, I understand the sacrifice you're making—a month and you're here. Thank you for coming.

From the Multiple Sclerosis Society of Canada, we have Ms. Deanna Groetzinger, vice-president, government relations and policy. Welcome.

May 1st, 2012 / 9:05 a.m.

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

Thank you.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

And we have Ms. Marie Vaillant, vice-chair of the Ontario division board of directors. Welcome.

And from the Neurological Health Charities Canada, we have Dr. Garth Bray. He's the chair of the scientific advisory committee. We are very pleased you're here this morning, Doctor.

And we have Dr. Ian McDowell, the vice-chair of the scientific advisory committee. Welcome. Thank you for being here.

We are going to have ten-minute presentations. Mr. Walton, we will listen to the other presenters as well, so you can listen carefully to what they say, and then after that we're going to into questions and answers.

The vice-chair is going to be taking the chair at 10 o'clock, because I have to go someplace else, but you'll be guided through everything.

Can we begin with you, Mr. Walton?

9:05 a.m.

Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada

Derek Walton

Madam Chair, honourable members, and ladies and gentlemen, good morning.

My name is Derek Walton. I live in Barrie, Ontario, with my wife and primary caregiver, Diane. Patrick Brown is our MP and a valued friend.

Once again it is my honour to be asked by the ALS Society of Canada to witness today on behalf of all ALS patients in Canada and explain what it is like to live with ALS, more commonly known as Lou Gehrig's disease.

Amyotrophic lateral sclerosis, ALS—three letters that change lives forever. ALS is a rapidly progressive and fatal neuromuscular disease that is characterized by the degeneration of a select group of nerve cells and pathways, called motor neurons, in the brain and spinal cord. This loss of motor neurons leads to progressive paralysis of the voluntary muscles and ultimate death when the chest muscles are no longer able to help the lungs achieve adequate oxygenation. It is a very nasty disease and is one that has been likened to being buried alive.

I am one of fewer than 2,500 Canadians living with ALS. However, unlike 90% of patients who pass away within five years from date of diagnosis, my symptoms are moving very slowly. Although the average life expectancy is just 2.7 years, many of those I have mentored to date have passed away in less than a year.

Sadly, there is currently no cure for ALS. That is why we need more funds for research to find a cure.

Although I was finally diagnosed in May of 2002, I believe my signs started as early as 1998. Unfortunately, ALS is usually determined after all other neurological diseases have been eliminated. I was misdiagnosed for years.

Because my symptoms are moving so slowly, I have used a cane, a walker, a scooter, and most recently a powered wheelchair. We have yet to purchase a customized vehicle, so I still use my scooter when travelling.

In a nutshell, I have been spared the short lifespan the majority of ALS patients and loved ones are given after hearing those three words and those three dreaded letters—“you have ALS”.

I am so thankful this committee has been formed, as, according to the WHO, the prevalence of neurological disorders will dramatically rise in years to come, from both the extension of life expectancy and an aging population globally.

However, I do bring an ask list on behalf of ALS Canada. They ask that the health committee create a comprehensive and coordinated national brain strategy to address the need for caregiver support, income security measures, genetic privacy, prevention, investment in neuroscience research, integrated care, and public education.

The new IBM research and development centre being built here in Barrie is a great start. However, a national brain strategy will greatly help to reduce the social and economic burden of neurological conditions in Canada.

They also recommend that neurological conditions be added to the Canadian chronic disease surveillance system; however, they thank the government for the work to date in achieving this goal through the national population health study on neurological conditions.

The ALS Society of Canada delegates are again coming to Ottawa on June 4th and 5th for our Hill Day, to meet with politicians to discuss compassionate care benefits in more detail. Please join us for our open air vigil on the Hill from 7 until 9 on June 4th.

In closing, I hope my testimony to the committee today has been beneficial and I can leave confident that my lone voice has been heard on behalf of all ALS patients and their families nationwide.

Thank you.

9:15 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you, Mr. Walton. Your coming to committee today makes a big difference. So thank you for the effort you've put in. Your insightful recommendations are much appreciated.

Dr. Kleiner-Fisman.

9:15 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

Thank you very much.

It can start with a slight tremor in the hand, or stiffness, or maybe it becomes difficult to walk. You know there is something wrong, but you're told it's old age or maybe arthritis or maybe it's in your head, which only makes it worse. But sooner or later, the diagnosis is confirmed: you have Parkinson's disease. You, a once vibrant person, are transformed into a full-time patient requiring increasing levels of care from spouse or family members and ultimately long-term care placement as the care needs become too overwhelming for partners and families.

The number of Canadians battling Parkinson's disease is 100,000. It robs each of them, ultimately, of their dignity and of their hope. When they need it the most, our health care system fails them, providing solutions that don't really match the disease and can't help them back to a better life.

But there is another way to dramatically improve the quality of lives of people with Parkinson's disease, while actually saving the health care system money. Honourable members of the health committee, it is this other and more holistic approach that I'm here to tell you about today.

My name is Dr. Galit Kleiner-Fisman. I am a Harvard-trained neurologist who has received further sub-specialized training in Parkinson's disease. I am currently an assistant professor in the Department of Medicine at the University of Toronto and the medical director of the ATC Jeff and Diane Ross Movement Disorders Clinic, a collaboration between the Baycrest Health Sciences and the Assistive Technology Clinic in Toronto.

Those I care for suffer from what are known as neuro-degenerative conditions. They are people who have ongoing and progressive damage to their nervous systems, as happens in Parkinson's. Care of people with Parkinson's disease is my life's work. My goal is to provide the best possible care using existing resources.

Right now, each year one in every 100 Canadians aged 65 to 80 gets a new diagnosis of Parkinson's disease. Over the age of 80, that triples to three new diagnoses for every 100 people every year, and that's in addition to the number of people already living with a condition. About 12% of Canadians aged 80 and over currently live with Parkinson's disease, and as our aging population grows this will double to 25%. So think about that for a moment. If you and your spouse live into your eighties, there is a one-in-two chance that one of you will live and die with Parkinson's disease.

Parkinson's affects every aspect of a person. It affects thinking. It can cause depression or hallucinations and problems with eating, voiding, and bowel function. But these non-movement symptoms are frequently not recognized as part of the disease by either patients or their doctors, and are misdiagnosed or left untreated. Untrained in recognizing or managing the complex and debilitating symptoms of Parkinson's, family doctors are caught between the increasing needs of desperate patients and an over-stressed health care system. All too often and needlessly, patients end up in emergency rooms, where they don't get the care that they need. In Ontario, in fact, people living with Parkinson's are admitted to the hospital 40% more often than people without Parkinson's. When they are admitted, they stay 20% longer than people the same age without Parkinson's. Studies have shown that a person with Parkinson's also has a five times higher risk of being placed in a nursing home, and then costs incurred while in the nursing home are also fivefold more compared to residents without Parkinson's disease.

In 1998 the Parkinson Society of Canada reported that long-term disability of Parkinson's patients cost the health care system $560 million. Now, more than a decade later, costs have ballooned to an estimated $750 million.

It is within our reach right now with current treatments already available to better manage symptoms, reduce unnecessary hospitalizations, and delay nursing home admissions, all while saving the health care system money and vastly improving the lives of patients and their families.

At the centre where I work, the Baycrest-ATC Jeff and Diane Ross Movement Disorders Clinic, that's what we do. In our model, the patients don't revolve around their health care professional, we revolve around them. While this model may be novel in Canada, it's not in other countries. For example, in the United States the veterans' health care system established inter-professional Parkinson's centres 11 years ago, and with great results. I was privileged to be a clinician at one of these facilities, called PADRECCs, or Parkinson’s Disease Research, Education, and Clinical Centers, when I was on faculty at the University of Pennsylvania. I saw first-hand how effective these PADRECCs were in addressing the complex needs of Parkinson's patients.

We'd all like to see medical advances in the form of a cure, but the fundamental question that drives our work at Baycrest and ATC is how do we use the medical and non-medical tools that already exist to improve the quality of life of patients with Parkinson's and other chronic neurological illnesses, all while staying within the current framework of our health care system?

Well, it starts with the philosophy of patient-centred care. In addition to the sub-specialist and a family physician who acts as a liaison with community family physicians, we also provide access to allied health professionals, including physical therapists, occupational therapists, specialized nurses, dieticians, social workers, and pharmacists all under one roof. This is called interprofessional care.

At the end of a patient's visit, everyone debriefs and provides recommendations for ongoing management based on collective input. We treat the whole person. As a result, we're more able to accurately fine-tune medications, deal with side-effects, and better manage the symptoms and issues that could otherwise result in a trip to the hospital. The fact is many Parkinson's patients don't get the instructions they need to follow through to better manage their disease. Our patients do, and so do their doctors.

We believe empowering family doctors to better treat Parkinson's disease is important. There's a great shortage of specialized Parkinson's care providers, even in a major medical centre like Toronto. In our model, GPs and patients themselves become more self-sufficient, freeing up the specialists' time to deliver specialized care to more people.

In Canada the provinces administer health care, but federal leadership needs to create the momentum for an integrated interprofessional approach to the management of Parkinson's and indeed for other neurological diseases.

The basic philosophy for our model of care is based on previous ATC models of care and includes the following: patient needs define services; care is organized around solutions; multi-disciplinary teams provide care; and results need to be measured to accelerate learning.

Building on these four fundamental principles, we believe the time has come to set up interprofessional centres of excellence for neurological care across Canada. Through these centres, patients will learn how to better manage their disease, will be seen more quickly, and be able to employ strategies that will keep them out of hospitals and enjoying a better quality of life, all while saving the health care system money.

We need to ensure access for all Canadians and not just those living in large metropolitan areas where centres usually exist. That will necessitate federal support to set up methods that will allow patients in remote areas of the country virtual access to these centres and the related professionals.

We recommend that each centre of excellence for neurological care should include the following components: adequate physical space for patients to see practitioners and where practitioners from all disciplines can come for training, along with the necessary infrastructure; sufficient funding to cover salaries and operating costs; virtual access via video conference for those in remote areas, along with an electronic patient record for virtual collaboration between medical and related professions; a database to share and collaborate with other centres of excellence so as to encourage clinical research; a website for patient education that is accessible in multiple languages and is sensitive to issues related to knowledge translation in those with disabilities; and a research and development program for entrepreneurial development of innovations, such as communication technologies, seating and mobility devices, and environmental aids for daily living, just to name a few.

We need to encourage collaborative partnerships between the public sector and business community as well as private investment to stimulate the economy.

Successful health care delivery models could also lead to social impact investing where private investors help fund not-for-profit projects and the investors are paid a return that comes from the money that projects save the government. Additionally, we need to encourage private donations through matching federal support.

In conclusion, Dr. William Reichman, the CEO of Baycrest Health Sciences, who testified in front of this committee on November 28, 2011, said that for elderly people to stay living in their own homes rather than being placed in nursing facilities requires deliberate, transformative change. We stand on the verge of a crisis. The needs of an aging population threaten to bankrupt our already strained health care system, but with great crisis comes opportunity. Using what we already have and know, we can make life better for neurological patients and their families, while saving money for the health care system.

Thank you very much, and I look forward to your questions.

9:25 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you very much for being here today. You're a real professional, and we all really appreciate your insightful comments.

Now we'll go to our next group: from the Multiple Sclerosis Society of Canada, Ms. Marie Vaillant.

9:25 a.m.

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

Madam Chair, committee members, on behalf of the Multiple Sclerosis Society of Canada, thank you for the opportunity to appear before you today.

My name is Marie Vaillant, and I am a volunteer for the MS Society. Currently I am a member of the Ontario division board of directors, and I chair the Ontario client services committee.

With me is Deanna Groetzinger, MS Society vice-president of government relations and policy.

The MS Society is a founding member of Neurological Health Charities Canada, so while we will talk about issues that are important to people living with MS, this also impacts people living with other neurological conditions and episodic disabilities as well.

We echo the thanks of other NHCC members to the government for the support of the national population health study of neurological conditions. It will provide crucial information on the incidence and impact of neurological conditions in Canada.

The MS Society agrees with NHCC that it is time to develop a national brain strategy. Such a strategy will help greatly reduce the burden of neurological conditions in Canada. We urge the committee to recommend that a strategy be developed.

Today I will provide more details about one of the pillars of the strategy—income security. Deanna will then provide an update about progress in research on CCSVI and MS.

The MS Society has long been concerned about the toll MS has on the ability of people living with it to remain at work. Many people are diagnosed between the ages of 15 and 40, just when they are finishing school, starting careers, and beginning families. As the disease progresses, it takes a toll on a person's ability to stay in the workforce full-time. Over time, up to 80% of people with MS can no longer work. Unfortunately, for most people, not being able to work means having to live on extremely limited incomes.

Sometimes there is job loss because MS symptoms have become more severe. But at other times it's because of a lack of understanding and accommodation by employers and because of insufficient government supports. 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.

9:25 a.m.

Conservative

The Chair Conservative Joy Smith

Excuse me for one moment.

Dr. Sellah.

9:25 a.m.

NDP

Djaouida Sellah NDP 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 Conservative 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 Conservative 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 Conservative 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?

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 Conservative 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.