Evidence of meeting #14 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was alzheimer's.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Weihong Song  Canada Research Chair in Alzheimer's Disease, Jack Brown and Family Professorship, University of British Columbia, As an Individual
Serge Gauthier  As an Individual
Rémi Quirion  Executive Director, International Collaborative Research Strategy for Alzheimer's Disease, Canadian Institutes of Health Research
Mark Ferdinand  Vice-President, Policy, Canada's Research-Based Pharmaceutical Companies (Rx & D)
Inez Jabalpurwala  President, NeuroScience Canada

8:50 a.m.

Conservative

The Chair Conservative Joy Smith

Welcome to our subcommittee.

I'm Joy Smith, the chair of the subcommittee.

It does feel like a full-fledged committee. We've done so much work on neurological disorders , and it's been a very serious topic with the members of the subcommittee.

This morning, pursuant to Standing Order 108(2), we are continuing our study on neurological disorders.

We are going to be starting with individuals. We have Dr. Song, from the Canada Research Chair in Alzheimer's Disease. We have Dr. Serge Gauthier. From the Canadian Institutes of Health Research, we have Dr. Rémi Quirion, executive director. From Canada's Research-Based Pharmaceutical Companies, we have Mark Ferdinand, vice-president of policy. From NeuroScience Canada, we have Inez Jabalpurwala, president.

Welcome to all of you.

We will start with you, Dr. Song. You have five minutes for your presentation.

8:50 a.m.

Dr. Weihong Song Canada Research Chair in Alzheimer's Disease, Jack Brown and Family Professorship, University of British Columbia, As an Individual

Thanks.

Honourable Chair, honourable members of the subcommittee on neurological disease, my name is Weihong Song. I am the Canada research chair in Alzheimer's disease, and a Jack Brown and Family professor at UBC.

It's my great honour to meet with you today to discuss the developments in research related to Alzheimer's disease and to present my suggestions and recommendations related to the federal role in supporting Alzheimer's disease research.

Alzheimer's disease is the most common neurodegenerative disorder leading to dementia. It costs Canadians $15 billion a year right now and it is estimated to be $153 billion by 2038. Every 71 seconds someone develops Alzheimer's. One in eleven Canadians over the age of 65 currently has Alzheimer's disease or a related dementia. It is the fourth-leading cause of death for people aged 65 and over.

This is a heartbreaking illness and burdens many families. One in six Canadians has someone with Alzheimer's disease in their family. My own family, actually, has been affected by this disease too. My father died from Alzheimer's disease seven years ago and now my mother suffers from stroke and dementia.

As you can see, this has affected me deeply, not only as a clinician and basic researcher professionally but also personally as a son of Alzheimer patients, to experience what is it like to be someone whose family is affected by it.

Canada has many outstanding world-leading Alzheimer research scientists and has an excellent track record in Alzheimer research. Canadian researchers made great contributions in discovering novel genes and their mutations causing Alzheimer's disease, in establishing unique animal model systems, in studying early diagnosis biomarkers and neuro-imaging, as well as in leading Alzheimer disease drug trails and development.

My own interest in Alzheimer's disease began 20 years ago ,when I was a chief psychiatrist in China and published my first Alzheimer research paper reporting clinical analysis of the disease. Previously, at Harvard Medical School, we discovered a role of gene mutations in the familial Alzheimer's disease.

Since I moved to UBC nine years ago, my laboratory at UBC has become one of the world's leading Alzheimer research labs. We recently discovered how low oxygen supply to brains, such as in stroke and other cerebral vascular diseases, leads to Alzheimer's disease development. Our pre-clinical study showed that an anti-epileptic drug, VPA, could prevent and treat Alzheimer's disease.

Researchers have made great strides for the past 25 years; however, at present there is no effective way to prevent and cure this disease. The major reason for this is that we do not know the real causes for the majority of the Alzheimer's disease patients, and the pathological mechanism leading to the disease remains elusive. Therefore, we have not had a good tool for early diagnosis and valid targets yet to be further uncovered for drug development.

Although there are many breakthroughs, the Alzheimer research in Canada is extremely underfunded by the federal government. The benefits of federal funding in Alzheimer's research are extraordinary. By delaying the onset of the disease by two years, we will reduce the cumulative costs by a quarter—$219 billion—by the year 2038. By delaying the onset of the disease by five years, we will reduce the cost by half—almost $400 billion over the next 30 years.

The need for federal action is urgent. Following are my suggestions and recommendations.

First, increase the federal funding for Alzheimer's disease targeted for clinical and basic research. It is especially critical to increase funding to basic studies on the risk factors and causes, underlying mechanisms, biomarkers identification and validation, and novel drug target discovery. My recommendation is for $50 million per year for the initial five years, for open competitions through the CIHR.

Second is federal support to build three to five research centres of excellence on Alzheimer's disease across Canada. The centres will serve as a basis for cutting-edge research and new knowledge generation, and a training base for graduate students and post-doctoral fellows, as well as recruiting and retaining the best scientists working on Alzheimer's disease in Canada. My recommendation is for $3 million to $5 million per year for an initial five years for each centre.

Third, increase federal support for awareness, knowledge translation, and patient care through national and local Alzheimer societies and organizations. Such supports should also be accessible in multiple languages and by minority ethnic groups.

Fourth is federal support for private donations on Alzheimer's disease. Such support will greatly encourage philanthropic efforts and partnership of the private and business sectors. My recommendation is to have matching funds available to the institutions and organizations receiving private donations that focus on Alzheimer's disease research.

My coming to Canada and my lab's success in Alzheimer's research can be greatly attributed to generous donations from the Jack Brown family and the David Townsend family. They have donated close to $10 million to me for UBC. The donations have allowed me to establish a state-of-the-art research lab at UBC with cutting-edge techniques and the ability to recruit talented peoples worldwide for the past nine years and have made significant impacts on our research to identify a novel molecular mechanism leading to this disease and a possible new treatment for Alzheimer's disease.

My final recommendation concerns federal support of international partnerships and collaboration on Alzheimer's disease research. International collaborations will greatly enhance our research ability with complementary resources and expertise from other countries. My recommendation is to support a joint Canada-China centre for translational medical research in Down syndrome and Alzheimer's disease. The centre will be a network of research teams of clinician scientists and investigators, based in Vancouver and Chongqing with team members from other top institutions across Canada and China. The international collaboration centre will focus on translational research and have joint quality personnel training, early diagnosis markers, drug development, health policy, and clinical service. It has received strong support from UBC, Chongqing Medical University, and the Townsend family donations.

My recommendation is for $5 million per year for five years for the partnership.

Thank you very much, respectfully.

8:55 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you, Dr. Song.

We'll now go to Dr. Quirion, executive director, from the Canadian Institutes of Health Research....

I'm sorry, Dr. Gauthier, you were on the list next. Maybe I should go to you first.

9 a.m.

Dr. Serge Gauthier As an Individual

Thank you, Madam.

Members of the Subcommittee on Neurological Disease of the Standing Committee on Health, I am going to speak to you today as a clinician-scientist. My recommendations will pertain both to research and the needs of patients and their families. I have provided you with a copy of my document.

For the past 20 years now in Canada, there has been important progress in the area of patient management. There have been three consensual conferences that brought together the main stakeholders, i.e. the physicians from the various disciplines, and the members of the Alzheimer Society of Canada. The meetings concerned dementia, which is one stage of Alzheimer's disease. If there is another meeting next year, it will not be about dementia, but rather about Alzheimer's disease as a whole. We now feel that we can diagnose the disease before the dementia stage, which opens the door to primary prevention among those who are at risk, and to secondary prevention among people who have premonitory symptoms.

My first recommendation is to encourage research on prevention through targeted initiatives by the institutes, which Dr. Quirion is going to address, and the participation of the Alzheimer Society of Canada, whose representatives you will be meeting next week. There could for instance be a registry of Canadians who would be interested in participating in research on prevention, which would help us to undertake projects at a lower cost, while having a greater number of participants.

Secondly, the development of medication that could help to prevent the disease depends on the Patent Act that is currently in effect. Between the development of these molecules that could help in prevention and their phase III clinical trials, from seven to ten years can elapse. And so the patents that are currently available will practically have expired by then.

At a symposium we took part in in 2007, the Americans mentioned this problem regarding the Patent Act. In Canada and in the United States, if the length of patents that is currently authorized remains the same, this act is going to limit the participation of the pharmaceutical industry in the development of new molecules that require very long trials.

My third recommendation is to consider the possibility of amending the Patent Act or its regulations in order to encourage research on molecules that could help in prevention.

We already have medication available in Canada to treat the symptoms of Alzheimer's disease, medication that has been rigorously assessed by Health Canada. Unfortunately, Canadians' access to this medication varies by province because of the coverage in effect in each province. Although the decision to reimburse medication is one that is made by provincial governments, I think that there is social unfairness in Canada due to the fact that medication that is already recognized as effective is not available to everyone everywhere.

For that reason, you could consider the possibility of bringing in a national charter on the rights of patients to have access to recognized treatments. My fourth recommendation is to eliminate differences among the various parts of Canada with regard to access to established treatments. That recommendation however may go beyond the topic of Alzheimer's disease.

My last point, and not the least, concerns the social and individual costs generated by the disease, which Dr. Song referred to. These costs increase as the patient approaches the dementia stage, be it moderate or severe. This has been demonstrated in Canadian studies. There are already tax credits for the diseased individual offered by both levels of government, on the order of $6,000 a year.

For caregivers, for instance the son or daughter of the patient who sometimes stops working for two or three years in order to assist his or her parent, the applicable tax credit is very low. It is on the order of $1,000 per year. You here at the federal level are the only ones who could consider increasing tax credits for caregivers, and also perhaps for the patients in order to help people to keep their relatives at home as long as possible.

Thank you.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you so much, Dr. Gauthier. We appreciate your presentation.

Now we have Dr. Rémi Quirion from the Canadian Institutes of Health Research.

9:05 a.m.

Dr. Rémi Quirion Executive Director, International Collaborative Research Strategy for Alzheimer's Disease, Canadian Institutes of Health Research

Madam Chair, members of the committee, good morning.

It's a pleasure, on behalf of CIHR and president Alain Beaudet, to be here with you to briefly summarize some of the recent funding activity and decisions of the Canadian Institutes of Health Research on research into Alzheimer's disease and related dementia.

To add to what Dr. Song and Dr. Gauthier said, I will give just a few words first on Alzheimer's disease.

Alzheimer's disease kills. There is no cure for Alzheimer's disease. The treatments we have are not truly effective, and miracles do not occur. Sometimes when you have cancer you have a remission, you have instant recovery. We don't understand it, but it happens. That does not happen with Alzheimer's disease. When you are diagnosed as suffering from Alzheimer's disease, you will die from it seven to 10 years later. It's a long journey, during which your loved ones see you and your personality disappear in front of their eyes. Even if you are still physically fit, it's a hard and long journey for the patient and for all the loved ones. Today, half a million Canadians live with Alzheimer's disease. It's the seventh-leading cause of death in Canada, and these numbers are increasing daily. Dr. Song mentioned there's a new case every 71 seconds.

Economically it costs society billions of dollars a year, and socially it's probably even more staggering in cost. In our view the solution is research. It offers hope for a better tomorrow and a better outcome. We are most fortunate that Canadian scientists and clinicians are recognized as being world leaders in the field of Alzheimer's disease research.

Research in Alzheimer's disease is a priority for CIHR. We are investing more than $30 million per year in our regular program, such as investigator-initiated grants, salary awards, and targeted team grants. CIHR, via its institute of aging, is the main funder--to the tune of $30 million--of a very ambitious Canadian longitudinal study on aging. It's a program that will follow a cohort of Canadians 45 and older over the next 20 years. Data from the cohort should prove most useful in informing us on successful aging--why some people age well, and why others do not age so well and develop Alzheimer's disease. We also support the Canadian Dementia Knowledge Translation Network, which aims to ensure that best practices are used in the treatment of persons suffering from Alzheimer's disease and related dementia.

This is clearly not enough, considering the size of the challenge. Accordingly, CIHR decided to make research on Alzheimer's disease one of its main priorities, with an additional investment of $25 million. This money is used to develop what is known as the international collaborative research strategy for Alzheimer's disease, with the aim of accelerating discovery by partnering with the Alzheimer Society of Canada and the very best teams throughout the world. Partnership is key, and in Canada we have an excellent but small community, so we need to partner worldwide to come up a solution.

The focus of our initiative is on prevention, early diagnosis, and early treatment of Alzheimer's disease. We believe that is where our investment will have the greatest impact and lead to the development of a truly effective treatment and even, hopefully, the prevention of some forms of Alzheimer's disease.

To date we have established partnerships with funders and scientists in France, in partnership with Quebec; a network including the U.K., Germany, Italy, Ireland, Belgium; China; and the United States. We are also hoping to develop a network of experts platform, such as genomics, epigenetics imaging, animal model, brain banking, clinical trial neuropsychology, and services in research and population health. We hope to develop that network of experts platform throughout Canada in the coming year. This will allow our Canadian experts to be able to partner at the international level with colleagues throughout the world.

But again, this is not enough compared to other countries that have made massive investments in the field of Alzheimer's disease research. These include the United States of America, Germany, the United Kingdom, France, and now many others.

So we need a large increase in funding in future years. We are confident that with increased support, our experts will deliver and discover ways to combat this formidable enemy known as Alzheimer's disease.

I have one recommendation for the committee today: that a significant targeted budget be provided to CIHR to fully implement our international strategy for research on Alzheimer's disease.

Thank you very much.

9:10 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you very much. We appreciate your presentation this morning, Doctor.

Mr. Ferdinand, would you present now, please.

9:10 a.m.

Mark Ferdinand Vice-President, Policy, Canada's Research-Based Pharmaceutical Companies (Rx & D)

Thank you, Madam Chair.

Good morning to everyone.

My name is Mark Ferdinand. I am the vice-president of policy and research at Canada's Research-Based Pharmaceutical Companies, otherwise known as Rx & D.

I have two modest goals to share with you today: first, to present to you the findings of our latest report--entitled “The Rx&D International Report on Access to Medicines”, otherwise known as the IRAM report--to really illustrate the differences that exist between Canadians' access to mental health drugs, including drugs related to Alzheimer's and Parkinson's; and second, to provide you with some recommendations that we hope would also allow us to incentivize further private sector research, generally related to pharmaceutical research, but specifically in the area that Dr. Gauthier spoke of a little bit earlier.

You all know very well that neurological and mental illnesses indirectly affect all Canadian men and women, whether those afflicted are acquaintances, members of the family, friends or colleagues.

Today, half a million Canadians are living with Alzheimer's disease or suffering from dementia. In the course of one generation, that figure could double and there could be one million affected people throughout the country.

We are well aware of the reality patients and their families must grapple with on a daily basis. That is precisely what motivates our industry to do what it does.

Canadians expect the best, and we think we have the best health care system in the world. However, findings from our most recent international report on access to medicines, undertaken by Wyatt Health Management—this time it's the fourth annual report—raise questions about the quality of Canada's health care system, in particular demonstrating that despite recent advances in care, Canada still lags far behind other developed countries in terms of access to new medicines.

Our IRAM report examines the public reimbursement of new innovative medicines and patient access to those medicines not only within Canadian public drug plans but 28 other OECD countries, including Scotland.

Our report findings illustrate the pressing need to provide appropriate choice and care for patients, particularly in the area of mental health and neurological diseases.

During my talk this morning, I will not actually be talking about early diagnosis and prevention, and the research that certainly could be done in that space. We believe there is still some room for improvement in that space, but I will be talking to you specifically about the treatment options that exist out there in the world today.

It's a wake-up call, really, for our country's leaders and for Canadians to understand how public health plans are performing vis-à-vis patient needs when we look at how Canada's health care system and treatment experience compare with access to life-saving medicines and quality of care for patients in other countries.

The overall findings of our report show that Canadians who rely solely on public health plans or public drug plans—senior citizens, low-income individuals, families—do not have the same access to new medicines as citizens in 28 other OECD countries, plus Scotland.

Suprisingly, these people do not benefit from the progress that has been made in medicine over the past five or six years.

9:10 a.m.

Conservative

The Chair Conservative Joy Smith

Excuse me, Mr. Ferdinand. Could you slow down just a little bit for our translators?

Thank you.

9:10 a.m.

Vice-President, Policy, Canada's Research-Based Pharmaceutical Companies (Rx & D)

Mark Ferdinand

Very well.

Canada ranks 26th out of the 29 OECD countries for public health plan reimbursement of medicines. Canadians expect better and deserve better.

The results of the Rx&D International Report on Access to Medication, the RIAM, put the emphasis on diseases that are of specific concern to this subcommittee. If we focus on access to medication for the treatment of mental and neurological diseases, the situation in Canada is even more worrisome. For neurological diseases, the international average for public health plan reimbursement of medicines is 88%. The patient access to the same medicines for Canadians is 28%. Canada ranks 26th out of the 29 OECD countries.

I would be happy to address specific data for Parkinson's and Alzheimer's drugs during the question and answer session.

In addition, an assessment of new drug launches over the last 20-year period places Canada second to last among leading economic nations behind Germany, Italy, France, the U.S., and the U.K. Not only are the drugs that are available and approved for use in Canada not available at the same rate as they are in other countries, but we also see that there are fewer drug launches in Canada compared to other leading countries.

What does this mean for Canadians? Doctors and health care professionals do not have the ability to offer patients in Canada the benefits of new medicines that reflect the latest research and new drug developments. And they don't have access to therapeutic choice, which may be very important for individuals who may not respond to the first drug that may be prescribed to them.

The impact of this steady erosion is reduced patient access to medicines and vaccines, concerns about the quality of care for patients and their families, and significant cost repercussions for the health care system, which is striving, as we know, to be more cost-effective and responsive to patient needs.

Specifically with regard to recommendations, first, we believe that Canada needs a more globally competitive intellectual property system and regime. We believe the implementation of effective right of appeal for innovators within Canada's patent regulations would be a step in the right direction.

We would also say that it would also be worthwhile, as Dr. Gauthier pointed out, to consider whether there are other amendments that could be made to the patent system to incentivize research and development in the private sector within Canada.

Second, Canada has been and continues to be a leader in clinical research in the world. However, that position is slipping. In order to further incentivize further private sector R and D in Canada, we believe that Canada can expand the definition of the current SRED tax credit to better capture all aspects of clinical research and clinical trials. We believe this is urgent. When clinical trials are done elsewhere, Canadians generally speaking have to wait longer to experience the benefits of new drugs and therapies that could otherwise be used in clinical practice here.

Third, a more predictable funding mechanism for vaccines should be added to public immunization programs, in general. As many of you may have seen in the last couple of weeks, we have seen at least some promising news in the world of research on a vaccine for Alzheimer's disease. We're at very early days, and certainly, right now, there is no private sector R and D being invested in that research from the pharmaceutical companies. But this is the type of research that we believe can be done not only in North America but certainly in Canada, given the expertise that is here.

Finally, as we all know, regulatory policy can also support patients' access to new medicines. That would be done through making Health Canada's regulatory review of drugs more efficient. What we need to do is break down existing and significant barriers to timely access to new medicines. When we compare Canada's review times to other countries', we know that they are doing much better than they were in the past. We are currently taking, on average, 390 days to review new medicines. But this is still longer than what we see in the States, which averages about 350 days for approvals, and almost 100 days longer than it takes in Europe.

In conclusion, caring for patients with Alzheimer's is like caring for a child who will never grow up. The patient is not independent, nor is the caregiver.

Our industry strives to reduce the burden on families and the health care system while improving the lives of these patients. We remain committed to working in partnership with all levels of government, stakeholders, and health care professionals to find ways to make innovative therapies available to doctors and patients, as other countries have done, to improve access for patients, and to provide better health care generally.

Thank you very much. I welcome your questions a little bit later.

9:15 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you very much, Mr. Ferdinand.

Now we'll go to Ms. Jabalpurwala.

9:15 a.m.

Inez Jabalpurwala President, NeuroScience Canada

Thank you, Madam Chair.

Thank you, committee members. I very much appreciate this opportunity to speak before you.

The brain is the most vital and complex organ of the human body. Brain disorders carry both economic and human costs that are greater than those for cancer and cardiovascular disease combined.

While some brain diseases respond to treatment, there are no cures at the present time. People with a brain disorder may live for a very long time, and with some conditions, they may slowly degenerate and lose function before dying.

When we link direct costs and costs associated with disability, we reach an economic burden that is in the order of $60 billion, and this is a conservative estimate, based on a 38% cost relative to the total cost of disease. Of course we've heard numbers about the growing Alzheimer's impact and related dementias, and of course the numbers are going to significantly escalate in the coming years.

For the past 10 years I have been the president of a neuroscience research funding organization that has brought science, business leadership, and academia together. During this period I worked closely with the Honourable Michael H. Wilson, who was our past chair and is now the honorary chair, and who has been a long-time advocate for the neurosciences. The current chair, Rupert Duchesne, is the CEO of Groupe Aeroplan Inc., but he started his career in neuropsychopharmacology. Both Michael and Rupert have been personally and directly touched by a brain disorder in their lives, so this is a very personal and meaningful mission for them.

The goal of NeuroScience Canada has been to maximize our current investment in research but also to make future investments more efficient and, most importantly, more focused on outcomes that will link directly to patients. NeuroScience Canada, with that in mind, provided the impetus and the rationale to form Neurological Health Charities Canada. That has been the grouping that has brought together the voluntary health organizations. It's significant to note that the U.S. has been quite envious of this accomplishment, because in fact to bring together all of these disease groupings around one common voice has been a significant challenge, and we are the first to have been able to accomplish this.

Over the past 10 years I have learned a great deal about both research funding and the science, and there are two themes that have emerged for me: our current state of funding, and where the science is going. For me, the main undercurrent of these two and how they're linked together is based on how we're funding and based on where the science is going; do we have an alignment, or do we need to fundamentally change the model upon which we are currently basing our decisions for funding science?

To look at the current status of funding, Canada has benefited because of government and private donors, who have put a significant amount into funding infrastructure and salaries to attract and retain our top faculty. This is seen through the Canada Foundation for Innovation, the Canada research chairs, Genome Canada, as well as private donors, such as what Dr. Song mentioned as being pivotal to his research.

Canada is a leader in the field of neuroscience, as all of my colleagues have mentioned. Many of the most important discoveries around the brain have been made by Canadian researchers or a Canadian lab. But we also excel at collaboration. We have a culture where we share knowledge and we share information. This is quite different from the way research is traditionally done in the U.S.; even though much better funded, it's a highly competitive and much more individualistic model. So we have something in Canada that is really quite special, and it's very appropriate for the brain, where there is a complexity that requires us to collaborate.

We also are known for our ability to maximize every dollar that we do provide to research. Although we hear that our funding is relatively low compared to the U.S., we are still able to achieve breakthroughs. So we should be very proud of the output of Canadians.

We have the capacity and the excellence. What's missing is the third leg of the stool, and that is the operating grants. Operating grants are what enable our researchers to run their labs and provide training environments to doctoral students and post-doctoral fellows. This is where we fall behind.

In 2009-10, the CIHR provided $179 million in operating grants across the neurosciences, and that includes mental health, addiction, and the sensory organs. The voluntary organizations, the ones grouped under Neurological Health Charities, combined were only able to disburse $20 million a year.

Now, that is a symbol of the public's response to the importance of funding brain research and their lack of understanding about the impact. The total is about $200 million.

That, when contrasted with the conservative $60 billion investment, we can see is really disproportionate.

Turning to the science now, 90% of what we know about the brain was discovered in the last 15 to 20 years. This was spurred by the 1990s, which were declared the Decade of the Brain, in which there was an explosion of brain research around the world. That led to basic discoveries about how the brain works. What we discovered was that we moved from looking at the parts of the brain to really understanding how the systems in the brain function and how the brain as a whole is one system.

We realize that there are three possible underlying causes to the range of brain disorders: cells die and particular types of cell groups or particular regions of the brain might result in a particular disorder; connections between cells don't function so they can't communicate with each other; or there are problems with the whole circuitry of the brain linked to a chemical or molecular imbalance, and this is the case for the vast majority of psychiatric conditions.

This also broke down these two silos of neurological and psychiatric conditions so that we have to stop thinking about the brain and the mind and start thinking about one mechanism in which there are linkages. We should also note there are many conditions, Alzheimer's being one key example, in which there are both neurological and psychiatric components, so we no longer have this barrier.

How have we been funding research? Traditionally we focused on individual grants to support researchers in specific disciplines or around specific diseases. This has produced important new knowledge about how the brain works, but recent experience indicates that we can actually fund in a way that will accelerate our ability to translate this knowledge into patients and treatment.

A series of pilot studies undertaken by NeuroScience Canada provided five grants that were multidisciplinary, multi-institutional, and focused on common mechanisms, and we saw dramatic results in terms of achieving breakthroughs. This program, which was called the brain repair program, was celebrated around the world by leading researchers. It partnered with the CIHR and worked with all of the communities, including the voluntary health organizations. We developed something that we feel is really very special, which led to our ability to more rapidly reach breakthroughs and to translate these into applications for how we are going to diagnose, treat, and cure brain disorders. So we see that there is a link between the funding and where the science is going.

What have I learned from all this, and what are my key conclusions? First of all, in order to maximize the return on our investments in infrastructure and salary, we need to do more on the operating grant side. We need to congratulate the government and private donors for building this infrastructure, which has given us the capacity, and now we need to make sure that these labs and these researchers are fully operating.

Second, we need to focus our research investment on the brain as one complex system and not just as a collection of diseases, and on investigating commonalities from which a single breakthrough has the potential for therapies and cures for multiple illnesses.

Dr. Song gave an excellent example of how an anti-epileptic drug was being used for Alzheimer's, so if that research had not been done in an area that one would think had no relation to Alzheimer's, we wouldn't have had what is a significant breakthrough. We have to stop thinking in terms of diseases and start looking overall at how we can have a multiple effect.

We need to better coordinate our existing efforts so that we can spur discovery and create resources that the whole field can share, through such things as creating technology platforms or bringing technology and people together so that we have something that everybody in the community can use and benefit from. We need to involve the public, patients, families, caregivers, and ultimately all Canadians who will be touched by brain disorder. Doing so will better link patients to outcomes and will also ensure that government investment is recognized and is used to stimulate private dollars, because we need to do more, as the general public, in terms of how much we are investing in research.

What does this mean finally? It means exciting the public around one unifying vision for the brain and engaging all of the key players: science, business and philanthropic leadership, and the voluntary sector. This is the thinking behind the national brain strategy that has been tabled to this committee.

We need to fund collaborative, multidisciplinary research with common themes that link the brain disorders to this big vision for the brain and reinforce the brain as one system. This does not mean that we stop funding the pipeline. The pipeline is important, and the individual grants are important, but we need to focus our efforts on the next big breakthroughs, and those are going to come about with these larger grants.

Finally, we need to create a public-private partnership to provide not just more government funding but strategic funding with a private component, a bottom-up consultative process, not a top-down one. This is the research pillar of the national brain strategy, and that was developed by the Canadian Association for Neuroscience working with the voluntary health organizations through Neurological Health Charities.

I believe the result will be a more efficient and effective use of public funding and a leverage effect that stimulates private investment in brain research. I believe the public will applaud a government partnership with the private sector for matched funding as a demonstration of their working closely with the voluntary sector organizations that represent patients, families, and caregivers; with the research community; and with business and philanthropic leaders.

We have a chance, right now, to do something spectacular for the brain. Canada has all the components needed: the way we do science, the way we collaborate, the infrastructure and salaries we've developed, and the model we have put in place.

Let's be a leader in this and let's do something really remarkable.

9:30 a.m.

Conservative

The Chair Conservative Joy Smith

With the permission of the committee, I'd like to ask a couple of questions prior to our starting. Then we'll go into our rounds.

Is that okay? All right.

I have a couple of questions for you. What is NeuroScience Canada? Is it an NGO?

9:30 a.m.

President, NeuroScience Canada

Inez Jabalpurwala

It is. We are a member of Neurological Health Charities as an organization, but we represent all of the brain disorders.

9:30 a.m.

Conservative

The Chair Conservative Joy Smith

You're an NGO, though. That's what you are.

What is your background? Are you a scientist or a doctor?

9:30 a.m.

President, NeuroScience Canada

Inez Jabalpurwala

No, I'm not a scientist. I was brought on board because one of our purposes was to not have what might be perceived as a bias of science. It was to use the science advisory committee to provide advice but lead an actual program that looks at how we can better do science.

9:30 a.m.

Conservative

The Chair Conservative Joy Smith

Okay, thank you.

You made a statement in your presentation that brain disorders carry an economic burden that is greater than cancer and cardiovascular disease combined. Where are your figures for that?

9:30 a.m.

President, NeuroScience Canada

Inez Jabalpurwala

That's based on several studies. We have that documented in the material I have circulated. We looked at what Health Canada had done in terms of evaluating the economic burden. It never had a category for brain disorders, so we put together this category based on the different diseases. Then we looked at what the World Health Organization has done in this area--

9:30 a.m.

Conservative

The Chair Conservative Joy Smith

You said “economic burden”. What is your dollar number?

9:30 a.m.

President, NeuroScience Canada

Inez Jabalpurwala

It is $60 billion.

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Conservative

The Chair Conservative Joy Smith

So $60 billion for brain. And that was based on...?

9:30 a.m.

President, NeuroScience Canada

Inez Jabalpurwala

That was based on 38% of the total burden of disease. That brings together both direct costs and costs linked to disability.

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Conservative

The Chair Conservative Joy Smith

Thank you.

Dr. Duncan, you have seven minutes for questions and answers.

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Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Thank you, Madam Chair.

Thank you to all of you for coming. You've presented so much material, I'm not sure where to go this morning.

Could you table, for the committee, all existing Alzheimer's and dementia networks in Canada and internationally? If that could be broadened to cover neurological, that would be terrific. Could you also table with the committee the investments by Germany, the U.K., the U.S., and other countries so that we can see that direct comparison, please?

Mr. Ferdinand, you mentioned that Canadians don't have access to the latest drugs or choices, or we wait longer. You said that you could give us the specifics for Alzheimer's and Parkinson's disease. I was wondering if you could do that now, please.

9:30 a.m.

Vice-President, Policy, Canada's Research-Based Pharmaceutical Companies (Rx & D)

Mark Ferdinand

Thank you, Dr. Duncan.

I'd be happy to table with the committee actual graphs and further information so that it's clearer, but I would just say that we were able to identify, based on our international report on access to medicines, 150 drugs, 33 of which were cancer drugs. That was our study. In that grouping, there were 29 drugs that treat neuropsychiatric disorders: addiction, mental health, Alzheimer's, pain, Parkinson's, and the list goes on.

I'd be happy to provide to the committee a listing of all those drugs, as well, so that you can see their status of reimbursement in Canada, under the public drug plans, and in the other countries.