Welcome, everyone, to meeting number 18 of the House of Commons Standing Committee on Health. Pursuant to the orders of reference of April 11 and April 20, 2020, the committee is meeting for the purpose of receiving evidence concerning matters related to the government's response to the COVID-19 pandemic.
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Before we get started, I would like everyone to check in the top right-hand corner and be sure they are on gallery view. With this view, you should be able to see all of the participants in a grid-like fashion. It will ensure that all video participants can see one another.
I would now like to welcome our witnesses. Each witness group will have 10 minutes for an opening statement, followed by the usual rounds of questions from members.
Today we have, from the Canadian Lung Association, Terry Dean, president and chief executive officer, and Dr. Mohit Bhutani, representative and professor of medicine in the division of pulmonary medicine at the University of Alberta.
From the Canadian Cancer Society, we have Andrea Seale, chief executive officer, and Kelly Masotti, director of public issues.
From the Canadian Organization for Rare Disorders, we have Dr. Durhane Wong-Rieger, president and chief executive officer.
From HealthCareCAN, we have Paul-Émile Cloutier, president and chief executive officer, and Dr. Bradly Wouters, representative and executive vice-president for science and research at the University Health Network.
From the Heart and Stroke Foundation of Canada, we have Anne Simard, chief mission and research officer.
With that, we will start with Mr. Dean.
Mr. Dean, please go ahead with your statement. You have 10 minutes, please.
Good afternoon, Mr. Chair, members of the Standing Committee on Health, and invited guests.
Let me begin by thanking you for the opportunity to appear before you today.
My name is Terry Dean, and I'm the president and CEO of the Canadian Lung Association. I am delighted to be joined by Dr. Mohit Bhutani, a respirologist and professor of pulmonary medicine at the University of Alberta.
Today I'd like to tell you about the Canadian Lung Association, how we have adapted to respond to the current respiratory pandemic, provide you with a perspective on the specific challenges of those living with lung disease, and share with you what we need in order to continue to carry out our mission.
The Canadian Lung Association is the country's leading organization focused on helping Canadians breathe. We do this by funding research, leading advocacy and providing up-to-date health information for all Canadians. We represent the one in five Canadians who live with lung disease. These are among the Canadians most at risk for developing a severe case of COVID-19. We also represent the five in five Canadians who simply need to breathe on a daily basis.
This year, we celebrate our 120th anniversary as an organization. Given the current situation, we are compelled to reflect on our founding in 1900 as an organization created to address another respiratory pandemic: tuberculosis, often referred to as TB. We made significant and valuable progress during that difficult time in our history, and we have helped to create solutions for prevention, testing, education and treatment of TB. We are confident we have a similarly valuable role to play now, 120 years later.
However, we find ourselves in the midst of a new respiratory pandemic, COVID-19, and our organization and our work have never been more important.
When you can't breathe, nothing else matters. No one knows that better than the six million Canadians already living with lung disease. We know these individuals are at the greatest risk of severe symptoms with COVID-19, including the need for hospitalization and treatment within intensive care units, and even death.
Beyond the very real increased risk, individuals with lung disease also face increased health anxiety. Many are concerned about properly identifying symptoms of COVID-19 and differentiating them from their existing lung disease. They have questions about how to continue their treatment, access medications and keep themselves in the best health possible. Finally, their caregivers, friends and support networks need to know the best ways of keeping them healthy and safe at the same time.
We've heard their collective voices of concern and have answered the call. We are doing our part to help Canadians understand COVID-19, prevent its spread and protect themselves.
We have created a unique suite of resources and tools to help them get the information they need. We've hosted a webinar, linking patients to respirologists and health care professionals to help them understand the specific impact that COVID-19 may have on them. We've created a series of FAQ videos that address the nuanced questions people have about smoking and vaping, as an example, and COVID-19, advice on medications and use of action plans, as well as how their specific lung disease would be affected by COVID-19. Finally, we deployed more resources so that our toll-free help lines could answer the increased calls that patients have on a daily basis.
As we put the patient first, we find ourselves doing more with less as we adapt our programs and resources to respond. We also fund critical lung health research, and we help develop early career investigators. If we are unable to continue to fund them, we risk not keeping them in the field of research at all, which would have profound long-term consequences on lung health.
From improving treatment options to enhancing quality of life or aiming to reverse or cure certain diseases, our researchers are working diligently to help all Canadians. Together, our programs and their research put the air back into the lungs of all Canadians.
During a time when we are being asked to do more, our sector is struggling. The COVID-19 pandemic has presented unprecedented challenges for the health care system and health charities across the country. The funding the government has provided thus far is greatly appreciated and provides some relief to some health charities. However, it is not enough to sustain them through the pandemic and into the future.
Canadians rely on health charities and will need our organizations to come out of this strong and ready to continue to deliver on the mission we've promised to carry out. The Canadian Lung Association is a member of the Health Charities Coalition of Canada, which represents a $670-million industry with 2,500 employees and almost three million patients. As a coalition, we need more support from the government to help us close the gap of revenue dollars to maintain our operation so we can get back on our feet and ensure that we not only make it through the pandemic, but we remain strong afterwards.
In closing, I want to thank the committee again for the opportunity to appear before you today. COVID-19 is a respiratory pandemic, and the Canadian Lung Association has never been more important. We ask the committee to consider the recommendations on further financial support for the charitable sector to ensure that Canadians continue to get access to the services and support they need today, but also into the future.
Now I would like to introduce you to my colleague, Dr. Bhutani, whom we invited with us today to demonstrate how we work in partnership with medical experts to help meet patients' needs. We'll be happy to answer any questions afterwards.
Thank you to the Standing Committee on Health for the opportunity to appear today.
I join you today to represent the partnership between the Canadian Lung Association and the Canadian Thoracic Society. The Canadian Thoracic Society, or CTS, is Canada's national specialty society for respirology. We are an interdisciplinary professional association of health care practitioners that includes physicians and a wide range of health care professionals from across the country.
As the COVID-19 pandemic began to spread around the world and in Canada, health care professionals and patients with lung disease began to ask questions about how best to manage their conditions under this new reality. Health professionals asked questions regarding how to manage acute and chronic lung symptoms, which medicines were safe to prescribe to patients, or whether there were any medicines that perhaps they shouldn't prescribe to patients during the pandemic. Similarly, patients were asking us questions about what they could do themselves to best protect themselves during the pandemic. Should they visit their doctors? Should they go to the emergency room or to the hospital in case they need to? How do they know if they have had a COVID-19 infection?
As the medical and scientific authority on lung health, the CTS and its members are ideally suited to guide Canadians through this challenging and unprecedented time. The Canadian Thoracic Society is Canada's leader in the development and dissemination of evidence-based clinical practice guidelines. This work is strengthened by our partnership with the Canadian Lung Association, which then translates these guidelines into public and patient educational materials and programs. Our collaboration allows patients to access the most up-to-date evidence-based information and medical expertise on issues impacting their lung health.
Since the pandemic began, the Canadian Thoracic Society has been extremely active in developing and disseminating documents on best practices for one's health in the time of COVID-19. Thus far, we have developed a website accessible by anyone, and we've developed clinical guidance for the optimal management of asthma, COPD—also known as chronic obstructive pulmonary disease, which is the number one cause of hospitalizations across the country—and sleep disorder and breathing.
We've collaborated with Health Canada, the pharmaceutical industry and various associations, such as the Canadian Medical Association and the Canadian Pharmacists Association, to develop a mitigation strategy for patients and clinicians in the event of an inhaler shortage, primarily speaking about a drug named salbutamol, which is a rescue inhaler used commonly by many patients. We're about to publish recommendations on intensive care unit triage thresholds for lung conditions like COPD and cystic fibrosis to assist health care providers and health systems in decision-making in the event of a major surge in hospitalizations.
The partnership with the Canadian Lung Association has been critical, as they have adapted these evidence-based recommendations and created educational infographics for patients with asthma and COPD to provide, in plain language, guidance on managing their condition during COVID-19.
For Canadians living with lung disease, there has never been a more important time to make certain that their condition is well controlled. This is important not only to them, for their well-being, but also for the well-being and protection of our health systems. Our partnership between the CTS and the Canadian Lung Association really gets the best evidence into action.
I'm very pleased to be here today to help support Canadians during this respiratory pandemic. We need to ensure that health charities such as the Canadian Lung Association can continue to offer these critical services now and into the future.
Good afternoon. Thank you, Chair and committee members, for having us here today. Thank you to my fellow witnesses.
I'm speaking from Vancouver, from the traditional territories of the Coast Salish people: the Musqueam, Squamish and Tsleil-Waututh.
My name is Andrea Seale. I'm the CEO of the Canadian Cancer Society. I'd like to share with you today the perspective of one of Canada's largest health charities, and to share the experience of cancer patients during the pandemic.
I think it goes without saying that the pandemic is testing us in more ways than we ever thought possible and that we're rising to the challenge on many fronts. It has exposed vulnerabilities and sharpened focus. I'm really happy to see that all the people who support our most vulnerable have taken a rightful place as real-life superheroes, and our health care system is evolving quickly. Elected officials, such as yourselves, and governments across the country have shown incredible leadership for our country.
Canada's charities and, of importance for this committee, Canada's health charities are in a very dire situation. It's estimated by Imagine Canada that registered charities in Canada will lose between $9.5 billion and $15.7 billion, and will lay off between 100,000 and 200,000 staff as a result of the pandemic. Job losses in occupations in the non-profit sector are already 1.4 times higher than in the rest of the economy.
The Canadian Cancer Society is one of the largest charitable organizations in the country. I can truly say that this is the greatest financial challenge we have faced in our 80-year history. We're just youngsters compared to the Canadian Lung Association.
The hundreds of fundraising events that we've had to cancel across the country have led us to forecast a drop in donations of between $80 million and $100 million in the year ahead. That's roughly half of our budget. We've laid off more than one-third of our staff. We've closed community offices across the country. With projections that the downturn will continue for some time, we're being forced to reduce our services and our support for cancer research funding.
The pandemic is also having an incredible impact on cancer patients and the caregivers whom we represent. Of course, the reality is that cancer doesn't stop being a life-threatening, life-changing disease in the middle of this global health crisis.
You may know that more than one million Canadians are living with and beyond cancer. They're among the most vulnerable in our communities right now, because they rely so heavily on a health care system that's forced, at the moment, to turn them away. They rely on community organizations that are overwhelmed. They rely on a support system of their friends and families, who must also stay away right now. In the words of one cancer patient, “I feel like I'm on planet Leukemia, and the rest of the world is on planet COVID. And I am not entirely certain where Earth is anymore or if I will ever get back there.”
For a sense of the scale of this challenge, one in two Canadians will be diagnosed with cancer in their lifetime. When you or someone you love has cancer—and many of you probably know this from personal experience—your sense of time is different. It's measured in hours, or in days or in weeks. It's measured in the visits to your doctor or the number of times you're going to be able to hug someone you love. As we delay these activities in the name of social isolation, imagine how hard it is for someone with cancer to wait.
Clinical trials have stopped, in many cases. Radiation, chemotherapy and surgeries are postponed. There are those who haven't yet been diagnosed and are waiting to find out if they have cancer. Almost a quarter million Canadians are diagnosed with cancer each year, and right now they're left to deal with their anxieties and fears, not knowing when they're going to begin treatment and hoping that their cancer hasn't spread. We know that when the pandemic is over and we're getting to see some light at the end of the tunnel, there will be a backlog to our health care system still to come, of many months or perhaps years.
During all of this, the Canadian Cancer Society is here to help. We're here for everyone, in 200 languages, including 14 indigenous languages. We're only a click or a phone call away. As the only national charity that supports Canadians with all cancers in communities across the country, we're the voice of Canadians who care about cancer. That's why I'm so pleased to speak with you today.
Through our online and telephone services we're hearing first-hand about the worries and anxieties. We're helping people, as well as their loved ones, navigate their new realities by addressing their concerns or separating the facts from all the fake news that's out there about COVID and cancer, and providing them with emotional support and resources to help them cope.
For a sense of what they're telling us, when the pandemic began, patients and caregivers were reaching out for information on COVID and specific information about the virus and cancer. Over time, these concerns have shifted to coping with feelings of isolation and depression, and are now moving toward frustration and fear as their treatments are delayed indefinitely and as people worry this will affect their ultimate prognosis. Some tell us that they feel like collateral damage from the pandemic. Others say that they feel like they're on the Titanic and only those with COVID-19 are getting into the lifeboats.
How does the Canadian Cancer Society provide these services? We fundraise almost $200 million a year through grassroots events, donations, sponsorships and online fundraising. We use that to fulfill our mission, which is to provide the support services I described, but also to fund life-saving research on all cancers—we're the largest funder of cancer research outside of the Canadian government—and also to advocate for health policies to prevent cancer.
As a result of the crisis, we estimate a large decline in our revenue and reductions in our research funding and our services. We're doing everything we can to adjust, adapt our fundraising and stay connected to donors across the country, but as you make critical decisions about Canadian health care and emergency funding, we want to ensure that cancer patients and cancer charities are not forgotten.
I ask that you please consider what you hear from the Health Charities Coalition of Canada and from Imagine Canada about the request on behalf of our sector, and please consider the Canadian Cancer Society's submission to the standing committee, targeted to address the needs of people with cancer and their caregivers, and specifically to provide funding to be able to continue our support services for the many Canadians living with cancer. We can help them cope with the pandemic now, and help them cope through the backlog in the health care system that's going to impact their well-being for many months. As we all get through this together, we're here to help.
Thank you very much for taking a few moments to hear from me today.
We applaud the global multisectoral collaborations coming together to combat COVID-19: to treat it, to find a cure and to prevent future infections. We're especially heartened by the public-private partnerships, which are essential for getting to successful interventions as quickly as possible.
However, in the same way that COVID-19 has exposed the inadequacies in Canada’s health care system, the experiences of rare disease patients in this time of COVID put in stark relief the lack of a comprehensive integrated approach to rare diseases pre-COVID.
While each rare disease affects only a small number of individuals, there are more than 7,000 rare diseases, which, together, affect one in 12 or nearly three million Canadians. Many of these conditions are associated with lifelong, debilitating symptoms affecting not only the patients, but also those who care for them. For Canadians with rare conditions, as you've heard for cancer and for lung disease, the fight against the disease doesn't stop during a pandemic. Indeed, in many cases, as you've already heard, it has become even more challenging. We have received numerous calls, requests and emails from patients trying to manage with their disease during this time.
In early April, we sent out a survey to our patient community to learn the impact of this. We had about 300 responses in just a couple of days. We were frankly shocked by the extent to which the lack of access to health care and other services is affecting them, and the seriousness of the consequences.
I'll give you a snapshot. Half of the respondents said they had experienced difficulty receiving medical care, such as delayed or cancelled surgeries, no blood work, limited access to dialysis and no physiotherapy. One patient said, “The surgery that is not happening would resolve a problem, in the meantime I am not functional and am bedridden and in a lot of pain.”
Second, about two-thirds were concerned about seeking health care because of the fear of contracting COVID-19. One respondent said, “I've been told should I contract COVID-19 I would be low on the list for treatment due to shortage and [a philosophy of] 'survival of the fittest.'”
Third, half said they could not access rehabilitation or critical services, including personal support care: “House bound/extreme mobility issues/no one able to help because of fears & stay at home in effect.”
About 40% could not access their prescribed medications, not because of drug shortages, but because of logistical issues in health care or pharmacy services, or lack of response to special access requests.
In fact, in a separate survey to the pharmaceutical manufacturers, CORD did receive assurances that the Canadian drug supplies were not in jeopardy and that steps were being taken to meet future supply needs and even to arrange alternative treatment sites if patients were getting infused. Furthermore, we were assured that ongoing clinical trials would not be interrupted, with adjustments made for alternative treatment sites, monitoring and data collection, if necessary.
In summary, it may seem self-evident that we should not neglect patients with serious chronic conditions while we battle a new disease, however rampant it is. Unfortunately, our survey and the calls to our infoline paint a stark and disconcerting picture of limited, delayed or denied access to testing, medical services, surgeries, rehabilitation therapy, supportive care and medicines, all of which inevitably put patients' lives and well-being at risk.
The underlying problem we come back to is that Canada has never approved a rare disease strategy, despite having national strategies for cancer, diabetes, cardiovascular disease and mental illness. Indeed, Canada is the only developed country in the world without an official national rare disease strategy.
Five years ago, in the House of Commons, CORD launched Canada’s rare disease strategy, which we had put together and which was developed and endorsed by leaders from all sectors. The strategy outlined five goals: improving diagnosis; providing for expert care and centres of excellence; ensuring community support, including patient organizations; access to treatments; and support for research.
While the strategy has yet to be endorsed nationally, it has nevertheless served as an important framework for a variety of important initiatives, including steps toward the development of provincial plans by Ontario and Quebec. However, it is clear that we cannot adequately and effectively address rare diseases through stand-alone provincial strategies and other piecemeal initiatives any more than we could conquer COVID-19 if each province were working in isolation. Rare disease needs national commitment, resources and leadership, particularly in this era of COVID-19.
Of course, I would be remiss if I did not acknowledge that the rare disease community is very grateful to see in the 2019 federal budget a $1-billion funding commitment to develop a rare disease drug strategy. Ideally, this would dovetail with the supplemental process proposed by the expensive drugs for rare diseases working group of the provinces and territories. However, I have to reiterate that in order for a rare disease drug strategy to be effective, it has to be imbedded in a comprehensive rare disease strategy.
Moreover, I'm also compelled to point out that the greatest threat to the potential benefits of a national rare disease drug strategy is the Patented Medicine Prices Review Board's regulatory changes that are scheduled for implementation on July 1, 2020, despite the lack of broad stakeholder consultation. This will affect the rare disease community probably more than any other.
To put it in context, the PMPRB changes, in particular the application of the economic factors to set maximum drug prices, would put some chronic disease patients at much greater risk than COVID-19. Ironically, if there were a breakthrough drug therapy for COVID-19, it would be unlikely to meet the new PMPRB pricing restrictions.
We obviously don't believe the government would reject a life-saving drug for COVID-19 on the basis of the PMPRB economic factors. We simply do not understand why the government is seemingly allowing the PMPRB to deny access to life-saving and life-enhancing drugs for rare disease patients.
I will conclude with two key learnings from our survey results, what we have identified and what we would like to have from the federal government.
The first is that while you deal with the crisis, don't sacrifice those with other health care needs. Set up a parallel team to identify, prioritize, triage and resolve the needs of those with chronic and other health care conditions. This extends, obviously, beyond the rare disease community, but it really does impact those with rare diseases disproportionately.
The other big learning is that Canada needs an innovative pharmaceutical industry. Companies in Canada are stepping up to ensure adequate supplies of emergency drugs and medical devices, and are partnering with researchers to develop new tests, therapies and vaccines for COVID-19. At the same time, they are ensuring that Canadians with rare and common conditions have continued access to the drug tests and other technologies that are needed. Perhaps this is truly the opportunity to develop effective public-private partnerships.
The problems experienced by the rare disease patients and families were not directly caused by COVID-19. Sadly, it has taken a pandemic to bring the pervasive deficiencies and dysfunctions in our health care system to the surface. We urge governments to address those issues now. We in the patient community are ready and wan to work with you, along with our clinicians and our researchers.
I would just add parenthetically that CORD has not applied for any of the support funds because we are, quite frankly, a very lean organization. We know how to work with limited resources. We have instead hoped that the funds would go to our hundred-plus patient groups, many of which are small, many of which are very much volunteer-led, and rely on fundraising events that are obviously not happening now.
Thank you very much.
Thank you very much, Mr. Chair.
HealthCareCAN is an organization that represents Canadian research hospitals, regional health authorities and health organizations. My thanks to the committee members for the opportunity to present to you today with my colleague, Dr. Brad Wouters, of UHN, with whom I will split HealthCareCAN's presentation time.
The research community, regional authorities and the Canadian Institutes of Health Research actively contributed to the responses to the COVID-19 pandemic.
The COVID-19 crisis has already exposed the gaps in the public health system, and the health care system more broadly. One of those gaps is the fact that Canadian health care facilities, designed for another time and place, are among the oldest public infrastructure in use today, with approximately 48% of facilities being over 50 years old. The picture in bigger cities is even worse, where 69% of health care institutions are over 50 years old.
Our hospitals are facing enormous budget constraints, which very often force them to postpone important maintenance work that is sorely needed to ensure quality patient care. We haven't adequately funded the maintenance of our health care facilities.
Once COVID-19 is behind us, we must complete the unfinished business of medicare by closing the gaps in long-term care and our traditional institutional health care system. As health care leaders now turn to addressing the backlog created by the huge numbers of cases and procedures delayed in the face of the pandemic, our focus must be on the building of surge capacity into our health care. This will require much more strategic support from the federal government as we work to addressing the coming surge of patients waiting for different types of care due to COVID-19.
Another area of deep concern for Canada's health care organization is the very fragile state of Canada's health research enterprise. Much of Canada's health research talent is employed by research institutes based in health care facilities. That talent drives a $3-billion annual sector of our economy, employing nearly 60,000 highly skilled researchers and staff nationwide. This not-for-profit sector accounts for the majority of the biomedical research that is conducted in Canada, including current essential research and clinical trials around COVID-19.
Hospital-based research drives improvements in disease prevention, diagnosis, treatment and care for Canadians. Here are two examples. Vancouver Coastal Health Research Institute has nine major centres, known internationally for their research excellence. It employs over 1,500 personnel engaged in research, 900 principal investigators, and graduate and post-graduate training conducting clinical and discovery sciences. The other example is the Research Institute of the McGill University Health Centre, which is also world renowned, with over 1,200 graduate and post-graduate trainees, and 440 researchers and staff. It is recognized for groundbreaking work relating to health outcomes in transplantation, infectious diseases and patient self-monitoring applications, among many others.
That workforce is paid through a combination of public and private research grants, charitable donations, allotments from foundations, and contracts for clinical trials which are almost all funded privately by biotech and pharmaceutical companies. That revenue base has all but evaporated in view of the COVID-19 pandemic. All research and clinical trials not related to COVID-19 have been either suspended or cancelled, with severe implications for the sector's capacity to employ essential research staff and contribute crucial research toward improving Canadians' health outcomes.
The health research institutes welcomed the announcement of the Canada emergency wage subsidy, but they were very disappointed to learn that, under Bill , they wouldn't have access to it.
Mr. Chair, thank you for the opportunity to speak today.
As Paul-Émile mentioned, on March 15, nearly all hospital-based, non-COVID-related research across Canada was suspended. At that time, our organization had budgeted $460 million for our hospital's research operations for the fiscal year, a sum which employs 1,000 scientists and 4,000 other highly skilled research staff, including clinical research associates, research nurses, laboratory technicians, biostatisticians, data managers, graduate students and post-doctoral fellows.
Our organization is the largest research hospital in Canada. It is one of the top centres in the world. It includes the Princess Margaret Cancer Centre, ranked in the top five cancer centres in the world. It also includes the Toronto General Hospital, ranked this year by Newsweek as the fourth best hospital in the entire world.
We perform more organ transplants than any hospital in North America. We have over a century of research accomplishments that include the development and application of insulin to treat diabetes and the discovery of stem cells. But never in our history has our research future been more at risk than it is today.
The majority of our industry revenue has been lost because the clinical trials and research projects they support have been suspended. Charities, as you've heard today, have also begun to cut their giving, resulting in forecasted losses of revenue for our institution alone of more than $10 million per month. We have managed to stretch our resources for the past seven weeks without job action and layoffs in hopes that the federal government would provide us access to support programs like the Canada emergency wage subsidy.
We operate in an extremely competitive environment with other health academic medical centres around the world. It has been important for us to keep our staff engaged, part of our institute and ready to relaunch and compete for funds when we come back.
Many of our researchers and scientists have also jumped in and contributed to a rapid response to COVID-19, bringing their unique skills and talents to the treatment and prevention of this disease. We have launched new clinical trials in patients. We are exploring the fundamental biology of the virus and we are developing new vaccines and therapies. However, 80% of our staff remain unable to continue essential research into cancer, lung disease, cardiovascular disease, Alzheimer's disease, rare diseases, diabetes and many other key diseases that kill the majority of Canadians.
Since our suspension, we have had numerous contacts with officials in several government departments. All of them have been extremely responsive and understanding of the situation we are in. We have asked to have the same opportunities as other businesses and not-for-profits, but have been excluded from these key programs because we are located inside a public hospital.
On May 1, we were forced to begin the process to identify roughly 1,500 staff for a first round of job layoffs because of the suspension-induced loss of revenue. If we continue to be unable to access these federal supports, we will face large end-of-year operating deficits, additional layoffs and insufficient revenues to support our cause.
Honourable members, institutions like mine all across the country are currently ineligible for the wage subsidy based largely on a technicality. Because these health research institutes are physically based in public hospitals they are designated as public institutions and are excluded from eligibility.
Our hospital and the care of patients is funded by the provincial ministry of health. However, we are legislatively prohibited from using any of that provincial support for our research. Instead our research is funded by a wide mix of over 900 different organizations. For the most part we are not funded out of public sources. To the extent that those funds do come from public sources through competitive research or innovation grants these have also stalled since March.
I would also mention that eligibility for these programs would come at a marginal cost to the government. The staff, if we are forced to lay off, will have access to the Canada emergency response benefit, but it is clear that it would be much more effective to keep those employees part of our organization. If we are forced to lay off that staff, they will be unproductive. They will be unable to contribute to COVID-19 research, and we will be at risk of losing them. This jeopardizes our ability to restart research and to compete for international industry and other funding when we come back.
Without urgent support from the federal government, we run the risk of setting back health research in Canada by decades and undermining patient outcomes in Canada in the future.
I'll make my comments in English, but I can answer your questions in French or English.
At our organization, the Heart and Stroke Foundation, there is a lot that echoes what other witnesses have said. In my testimony, I am going to highlight for you the impacts of COVID-19 on those with heart disease and stroke, and their caregivers, and how we have been responding and supporting them through this time. I will also address the financial toll the pandemic has brought on us within this sector and, to echo some other comments, specifically the issues regarding health research, at a time when science and research are incredibly important.
I will first focus on COVID and the intersection in our understanding. We know that it has worse impacts on people with underlying conditions, such as heart disease and stroke. We know that people with heart conditions are four times more likely to die if they have the virus than those with no underlying conditions, and those with previous strokes are three times more likely to die. As some of the other witnesses spoke about, we know that it has devastating respiratory impacts, but underlying and emerging evidence is showing that it actually has a significant involvement with the cardiovascular system and serious consequences like clotting, stroke, cardiac arrest and heart attack.
Right now, as others have talked about, people with heart conditions and risk factors are very much adhering to the physical distancing and self-isolation precautions, but what is really happening—and it is a very worrisome, unintended consequence of the pandemic—is that people experiencing signs and symptoms are not seeking medical attention for fear of coming into contact with the virus, or are justifiably worried about overwhelming our health system.
We at Heart and Stroke have just done a piece of data analysis with the Canadian Cardiovascular Society. We found that in Ontario there's been a 30% reduction in ER visits over the period of March and early April for STEMIs, which are the most serious type of heart attack, and a similar reduction for stroke-related visits. At Vancouver Coastal Health, they're seeing a 40% reduction in STEMIs.
We're very quickly mobilizing to continue to draw attention not only to COVID but also to the importance of really treating medical emergencies as such and seeking care. I also very much echo what some of my colleague witnesses have spoken about. People with heart disease and stroke are managing complex, chronic conditions with a lot of medications and rehabilitation, and a lot of them now are not getting the kind of support and care that they need, in addition to things like delayed surgeries and delayed treatments.
In fact, for us at Heart and Stroke, the number of people seeking guidance and support has been a bit overwhelming. In the last two months, we've had one million people coming to our website and nearly 100,000 accessing our COVID-specific resources, webinars, supports, online—
Heart and Stroke produced the best-practice guidelines for stroke, and we have adapted them to work with how clinicians and institutions can treat stroke in this very challenging time. One of the realities is that despite all the quick action during COVID, we know there are going to be very significant lasting impacts, and for organizations such as ours, quite a reduced capacity to provide the kind of support we have always provided.
Like other health charities, we have had significant impacts from the pandemic. All our fundraising activities, except online, are largely on hold. We have already had an immediate revenue loss of $25 million, and have accordingly made many difficult decisions, including laying off nearly half our staff. At the same time, however, we recognize that heart disease and stroke affect nearly 1.6 million people every year, so we still need to be focused on going forward.
Within all the things we talk about in information and support and working with the health care community, the other function we also perform is funding. After the federal government, we are the second-largest funder of research into cardiovascular disease. We support some 700 researchers across the country, and our funding for them is quite precarious.
I think the challenge we're all quite concerned about is that health charities like ours have delayed or cancelled our competitions, and we're wondering about delaying payments. However, as COVID does create some research opportunities, many researchers and tremendous innovation, there are also hundreds of other research projects with years of money invested, millions of dollars, that are nearing completion and are now in danger of being wasted if we can't continue.
I think of all the partnerships among health charities that are more public and vocal and talking about the change that needs to happen, working closely with research institutions, researchers, scientists, clinicians and translating that science into action. Those partnerships are very successful, but they are at risk, and if we can't continue, not only is that knowledge translation at risk, but there will also be an erosion of expertise and a loss of progress on experiments and clinical trials. It's a very beautiful thing when it works, and a complementary piece that is so fundamental to caring for the many people with chronic disease in Canada.
Our focus and our appreciation of being able to speak with you today is to speak to the partnership among health charities. We've heard reference to the Imagine Canada partnership and the Health Charities Coalition of Canada that are asking for broad support for not-for-profits' and charities' operating costs. If we just focus on the research component of the help we need, we fund about 155 million dollars' worth of health research every year and are at a period where we're wondering if we're going to be able to continue to do so.
A way we could come forward and sustain that decades-long partnership—century-long partnership if you're the Lung Association; we're a mere 70 years old—is sustaining our ability to be part of that research and then to translate that research into impacts on patients.
I would mention two other small points. The federal government has made huge investments, $1.1 billion, in COVID. I think one of the questions is how much of that will look at the intersection between underlying medical conditions and compromised and vulnerable people and what those outcomes are. I think there's a real sense that it will be much worse for them, and we know that already.
The last point is that we as health charities have for a long time had many partnerships, including with the federal government. We're very open to solutions, and one idea is to do a partnered model by which we could match donor dollars with federal dollars, public dollars, to sustain some of those research investments.
At the Heart and Stroke Foundation, we've been very grateful to the federal government for the five-year, $5-million investment into research on women's heart and brain health, in which we matched donor dollars to federal dollars to really push women's health equity.
In closing, I would just echo not only my comments, but the comments of other witnesses. This is a precarious time for health charities, as it is for other organizations, but the intersection between the patient experience, the caregiver experience and health research and the translation of that into awareness, information and action is really a unique place in which the health charities operate.
We thank you for your consideration and attention to our requests.
Yes, one hundred percent.
In the pulmonary-lung world, the two primary conditions are asthma and chronic obstructive pulmonary disease, COPD. For both of those diseases we use a medicine called, as a broad term, an inhaled corticosteroid. It is a very minute dose of steroid introduced into the lungs to help deal with the conditions.
The concern that patients and other practitioners have had is that steroids suppress your immune system. If you have asthma or COPD, does taking this inhaled steroid put you at any higher risk of potentially acquiring the infection? There's no evidence to suggest that is the case. In fact, it's the opposite. We really want patients with those two conditions to optimally manage their lung condition to prevent them from developing some of the more serious complications of the infection, if they were to acquire it. In fact, we tell them to be more compliant with it.
The only issue we've run into relates to dispensation. Because of the pandemic and the preparation for a potential hospital surge, Health Canada recognized, through a report from the pharmaceutical industry, a need for salbutamol, a rescue inhaler also known as Ventolin. You might recognize it as the blue inhaler, as it's the one most commonly seen around. It's meant to be used in a rescue circumstance. There's going to be a potential shortage of it because hospitals have acquired a large quantity of it in anticipation of a hospital surge.
Health Canada and the partners we identified in our notes got together and developed a strategy. The comment earlier about dispensing one month at a time, really, from our world, has come from that standpoint. We weren't sure what was going to end up being needed and required as the industry tries to replenish its supplies.
Right now there's no concern. I think we've developed a really nice mitigation strategy to deal with that, should it happen.
This is the first time I have subbed in to this committee or any virtual committee, and of course my first disappointment is that it doesn't have all the power we would normally have. Certainly if we did, I'd be making a motion right now and supporting Dr. Kitchen's thoughts around the issue of the CEWS and the CERB.
You're paying money for one versus the other, and you get so much value out of the other. I would have loved to be able to make a recommendation to the government that they need to perhaps broaden that criteria.
I really appreciate that testimony, because you spelled out the case very clearly. It can't be a motion of committee, but certainly I think that as independent MPs, if we feel strongly about it, we should all take the opportunity to move that forward.
My first question would be perhaps to Ms. Seale of the Canadian Cancer Society.
It's very tragic. There's a young woman who is dying of cancer and receiving care at home, but of course no one is visiting her because of COVID. Is there any mechanism or is a system in place—and do you have access to PPE, proper equipment—whereby people in palliative care, in their home environments or others, can have visitors? What a terrible thing to be dying alone at home without people coming to visit.
Is there a system in place? Is there adequate protective equipment so that we can have those sorts of visits?
There are two parts to that question. The first is whether I am aware of any other shortages.
Drug shortages are very common within the country. Health Canada has a website called drugshortagescanada.ca, where all the up-to-date information is applied. These are commonplace. What the pharmaceutical industry has historically done is order or procure a certain number of units of medicines based on historical norms. Things moved very quickly between January and March in regard to the pandemic and a lot of the purchases from the hospitals increased in anticipation of what Mr. Cloutier talked about in regard to the surge planning. I think what ended up happening with the salbutamol MDI, which we use for patients on a ventilator, was that the hospitals stockpiled them. From what we can understand from the information, it wasn't really patients, it was more hospitals stockpiling them, which was the appropriate response from a planning standpoint.
The other complication with salbutamol is that when you're on a ventilator you actually have to use double the dose of the salbutamol, because a lot of the medicine is lost in the tubing of the ventilator. Therefore, for what you need to get down there, you actually have to administer double the amount. That created a perfect storm between requirements from the hospital in terms of what they're planning for and then non-availability for patients.
Working with the pharmaceutical industry, Health Canada and the partners I've identified, we've done a really good job in trying to resolve this, so the concept of the salbutamol shortage is a bit nuanced. Yes, they're only getting one month's supply of it, and I think there was a discussion earlier regarding the dispensing fees resulting from getting only one month's supply. However, in all honesty, if you're ideally managed with your asthma and your COPD as an outpatient, you should theoretically, by current standards, only need one inhaler per year. In reality, if you're using more salbutamol as an outpatient, you should probably talk to your doctor about your chronic management because it probably needs to be improved.