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Results: 61 - 75 of 666
Christopher McCabe
View Christopher McCabe Profile
Christopher McCabe
2021-06-04 15:34
I don't know how many times the Canadian government has used compulsory licensing.
I think the magnitude of benefit of Trikafta to the Canadian CF population is so large that it would be legitimate for the government to consider using its compulsory licensing power if Vertex persists with not bringing it to Canada.
Again, I would hope that would not happen, because it would be a failure of the system.
View Jennifer O'Connell Profile
Lib. (ON)
Thank you, Chair.
Thank you to all the witnesses for appearing.
Ms. Little, thank you for your testimony and for sharing your daughter's story. You spoke toward the end of your opening statement about—forgive me for paraphrasing, but it stuck with me—how at first you thought about your daughter accessing these drugs to save her life and, as she gets older, how you worry about whether she can afford to sustain these life-saving medicines. That's the piece that I think a lot about when we're having this conversation.
It's this issue of whether drugs will come here, but I often wonder, even if the drugs come here with outrageous prices, how does that make them any more accessible for the average Canadian, unless they're independently wealthy? I see so many GoFundMe pages fundraising for individuals to get some of these drugs. Could you just speak a little more about that experience and the availability to access them even if drugs do come here?
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 15:42
This is something we always think about as a family. One, we're very fortunate that my husband does have a great benefits package. When Cystadrops came onto the market, the insurance company lay in the weeds to see if the government was going to cover it before the company made the decision. The insurance company just sat and waited, and thankfully, we didn't have to go without the drug in that time period.
In Ontario, though each province as we know is different.... From what I know, every family in Canada has received coverage for cystinosis. We're very lucky. We're an ideal population. There are roughly only 100 of us and not 5,000. It would be a different story, and we'd have a different battle if....
The family I mentioned in my testimony does have Procysbi and the eye drops covered. They have insurance. Their insurance package isn't as nice as our family's. Some of the drugs that treat our children are not covered, because they are supplements, but if they do not get these supplements, they will go into renal failure. One family still pays out $230 a month for these supplements.
The excessively priced drug is one thing. How do I raise my child? Do I have to raise my child for her to take a job in a company, so she can get a good benefits package versus doing something she's passionate about? As Canadians, I don't think we should have to think about that as a family. She should have every equal opportunity and access to treatments. She was born this way. This wasn't lifestyle; this wasn't an accident. This is how she was born.
This is why we need to be concerned. Just because Canada covers these drugs now, doesn't mean it is going to 20, 30 or 40 years from now.
View Jennifer O'Connell Profile
Lib. (ON)
It leads to the fight that even if these drugs get approved.... We look at Trikafta, and CF is a good example. Even when the drugs come through that approval process at Health Canada, the next fight is, are the provinces and territories going to cover them, or is private insurance going to cover the costs?
It just feels that when drugs are approved for use here, the fight begins over who's going to pay for them, because they're so expensive in many cases.
View Don Davies Profile
NDP (BC)
That's the point. It's not just a private commercial transaction. The public grants a patent to private companies, which then have 20 years of protection. Someone has to protect the public interest in this, otherwise a pharmaceutical company could say, “We want a billion dollars a pill, and if you don't pay it, we're just not going to make the drug available.” That clearly can't happen.
I'm going to go to Ms. Little for my last question.
Ms. Little, should we proceed with these PMPRB changes, and what would be the impact on your family and your daughter of those reforms going ahead?
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 16:08
Yes, I do believe we need to move forward. They might not be perfect, but they're progress and that's what we need.
Mr. Davies, I'd like to answer your question, but I just want to say one thing.
Ms. Rempel Garner, I appreciate your calling my testimony today “compelling”. As a patient, I'm not here to be compelling. I, too, run an organization and sometimes I feel that I am dismissed because I tell a story, but I tell the story that everybody at this table serves. We are the customer of this product.
Somebody once said to me that our story is a bit like being suddenly cast adrift in a vast and stormy sea in a lifeboat surrounded by unmarked ships that are being piloted by either the Mexican drug cartels or the Coast Guard, but there is no way of knowing which is which. Sometimes that's how we feel, with government on one side and pharma on the other. Even within the advocacy space, we need to know that we are being supported and that our children and our patients are being protected.
For that reason, I do feel that we need to move forward.
Thank you.
Michelle Porter
View Michelle Porter Profile
Michelle Porter
2021-06-01 15:38
Thank you for the invitation to speak today.
I am the director of the Centre on Aging at the University of Manitoba in Winnipeg. Our centre has existed since 1982 and is the focal point for research and knowledge mobilization on aging in Manitoba.
The first issue I would like to discuss is access to information and services specific to the pandemic. One example here includes the fact that most resources, information and booking systems, etc., have relied on web-based systems. Whether it was finding out about where testing locations were or when to get vaccinated, this information is typically provided as a website. In the short term, we need to ensure that access to information is available through the phone as well. Phone numbers need to be highly publicized, through COVID press conferences, for example. If you don't have access to the Internet, how do you find the phone numbers?
We applaud the federal government for providing funding to add a phone line to the Manitoba 211 services. This is a needed service in the short term.
In the long term, we need to find ways so that everyone has access to the Internet. This requires physical infrastructure. It also requires that everyone can afford the equipment and services, regardless of where they live and what their income is. Access to Internet is critical for long-term care as well. In many homes, Wi-Fi did not exist or was not sufficient, so including this in standards for long-term care would be important. Every resident room and common room in a long-term care home should have good Wi-Fi.
Another access issue that has been quite apparent is transportation. Age-friendly transportation and affordable resources are lacking in many locations, particularly intercommunity transportation. This has affected access to COVID testing and vaccinations. If aging in place is a goal for governments, then we have to ensure that communities are age friendly in terms of transportation.
One tragic story in Winnipeg occurred when a family had to pay for a stretcher service to bring their bed-bound father to a vaccination site. An age-friendly community would find ways to ensure that the environment can enable that person to live in a non-institutional setting and still receive services.
Another long-term care issue is related to quality of life. Clearly, there is not enough recreation staff in long-term care. These workers, primarily women, who are key to residents' quality of life, are often only able to find part-time and low-paid positions. We need to ensure that we think beyond the health care aspects of long-term care and provide much more in terms of social care, because these places are people's homes, not hospitals.
Overall, we need to ensure that all workers in long-term care receive the training they need, as well as the respect that they deserve through proper compensation for their vital roles. As we build back, we need to focus on the care economy and ensure that women from all backgrounds are not left behind.
The final issue I would like to introduce is the consequence of sedentariness during the pandemic. Many older people have moved very little for many months. This has implications for risk of falling, health and physical function. Post pandemic, we will need to ensure that programming and services will be available to respond. For example, we know that an individualized approach is critical for falls prevention. However, in Winnipeg, we have lost universal access to adult outpatient therapies because these services are not part of the Canada Health Act. This means there is reliance on private health insurance or paying out of pocket.
Similarly, access to therapy service is not sufficient within long-term care either and residents have experienced a dramatic reduction in their physical activity. Of course, we cannot forget about all of the individuals who will need to recover from COVID. We need targeted federal funds for appropriate therapies and physical activity programming to allow individuals to recover their physical health.
I would like to end by saying that the Government of Canada endorsed the global strategy and action plan on aging and health of the World Health Organization. The year 2020 saw the official launch of the Decade of Healthy Ageing by the WHO. Canada needs to ensure that, coming out of this pandemic, we are ensuring that older people are able to achieve good health in age-friendly environments that are free from ageism.
Thank you.
View Kate Young Profile
Lib. (ON)
View Kate Young Profile
2021-06-01 15:54
You also, Dr. Porter, mentioned transportation. You said that if aging in place is our goal—and a lot of people now are questioning whether they'd ever want to end up in a long-term care facility—age-friendly communities are important.
What would you think we should do, as a federal government, to further that goal?
Michelle Porter
View Michelle Porter Profile
Michelle Porter
2021-06-01 15:54
Well, the federal government is overseeing the age-friendly communities initiative across the country, although, of course, there's a large provincial jurisdiction over many of the services, which includes transportation. I'm not exactly sure what the role of the federal government is, and this is one of the issues that [Technical difficulty—Editor] involved in transportation, which includes municipalities. Municipalities really need support in providing these services, whether they're rural or urban communities. It is not a great scenario and we see stories in the paper where people are not able to get to vaccination sites, which is the main health care issue right now.
We're doing some projects right now in Manitoba. We did get some funding for them, but it all came about a bit too late. I think in general, within health care, there's a concept that someone will set up the appointments and hope that somehow people will figure out how to get to them. However, we've heard over and over again, when we've done consultations across the province, that transportation is a huge barrier for people when getting services, in particular with health care, and in being able to engage in their communities.
Lise Lapointe
View Lise Lapointe Profile
Lise Lapointe
2021-06-01 17:07
Let me respond and also add to Mr. Lynch's response.
Yes, seniors have a standard of living that normally is not acceptable. Many people have complained about the measure announced by the federal government saying that it is discriminatory. Why shouldn't a person under the age of 75 be entitled to the same amount and a substantial increase in their pension income called the old age pension? We get calls from people who complain and are unhappy with the situation. So that needs to be addressed.
Our seniors don't invest in tax havens, that's for sure. It's also a fact that when they receive additional money, they can afford certain activities that they normally can't afford. This generates economic spinoffs, often at the local level. So you can understand that receiving a little bit more money from the federal government would actually allow them to afford cultural activities, transportation, or a little treat in the week or in the month, something that they normally don't get.
With respect to home care, yes, there is progress to be made. For example, to encourage home care, there could be a grant for the renovation of housing that seniors occupy. Of course, there is a program to help people with disabilities or deteriorating physical health adapt their homes to their situation. However, the forms are so complicated to fill out and the wait is so long that people often have to live two or three years in a house that is not adapted to their needs. So they will choose to go to a private seniors' residence or to a residential and long-term care centre, or CHSLD. So that's another measure that the federal government could improve.
On the other hand, on the municipal side, there should also be agreements so that seniors have access to free transportation. This would make it easier for them to get to doctors' appointments and other appointments without the need for a caregiver or companion.
These are some examples of measures that would not cost astronomical amounts of money, but could make life easier for seniors.
Ellen Blais
View Ellen Blais Profile
Ellen Blais
2021-05-25 11:05
Thank you. Shekoli. Good morning.
I'm speaking to you today from Wasauksing First Nation near Parry Sound.
Thank you, committee members, and thank you, Madam Chair. I am honoured to have the opportunity to have a few minutes to share with you some words about the value of indigenous midwifery to the health and wellness of indigenous communities.
My name is Ellen Blais, and I hold the position of director of indigenous midwifery at the Association of Ontario Midwives. I am a graduate of the midwifery education program at Ryerson University, and I am from the Oneida Nation of the Thames.
I would like to share the name I was given that connects me to my spirit. In the Oneida language my name is Kanika Tsi Tsa, which means Little Flower. I was born through the waters of Many Flowers, who was born through the waters of She Who Carries Flowers, my maternal grandmother. My identity comes from a place of dislocation from the moment I was born, being taken away at birth by child welfare from my culture and my roots. The story of indigenous midwives is inherently related to dislocation as well, up to and including the closure of the Laurentian University midwifery education program.
Sadly, my story is shared by many. Although indigenous people make up about 4%-5% of the population of Canada, in many jurisdictions well above 60% of our population are in the care of the state. Since indigenous midwives are often present at the birth of indigenous babies, they work hard every day to intervene in these destructive practices and are providing excellent clinical care to every indigenous family they are working with. However, there are far too few of us to sustain this kind of work into the future.
I have three recommendations that I will now share, and then provide you with real-life contexts of why these recommendations are relevant.
First, we need a commitment from the federal government to build capacity for indigenous midwifery programs and services by developing a funding strategy to ensure indigenous midwifery is core funded.
Second, we need a commitment from the federal government to provide a mechanism to hire midwives and to provide housing and infrastructure for midwives in first nation and indigenous communities.
Third, we need a commitment from the federal government to provide funding for indigenous midwifery education, so that individual communities can support broader initiatives or create their own midwifery education programs that are relevant to the community, self-governed and community-responsive.
To connect the theme of dislocation, the history speaks for itself. The colonization of indigenous lands and resources also involved the forced removal of our children by the state to be placed in residential schools, now replaced by the current child welfare system. The medicalization of childbirth, along with policies embedded in the Indian Act, pushed indigenous midwives to the side and extinguished their work.
Without these overwhelming forces, midwives would have stood strong to keep birth in our communities. Midwives would have held our babies close and would never have allowed infants and children to be taken out of their mothers' arms. The anti-indigenous racism that is so prevalent in our health systems would not have been allowed to develop exponentially, to the point where indigenous people die from lack of culturally safe care.
In addition, the closure of Laurentian University has left a huge gap in providing midwifery education in the north, and with that, access for midwifery education for indigenous students and the growth of indigenous midwifery in northern communities.
Allow me one moment to ask you a few questions to illustrate my story.
If you have had children, imagine yourself when you were preparing for childbirth, or maybe even preparing for the birth of your grandchild. What were your hopes and dreams for your birth? Where were you going to have your baby? Most likely, you were thinking about your home, your family and your community.
Now replace your thoughts with these. Imagine yourself getting on a plane alone about four weeks before your baby is due. You wave goodbye to your family and hope that they will be okay. You arrive in a small rural or remote community thousands of kilometres away, where you know no one. You live in an unfamiliar place and you wait four lonely weeks until your baby is born. At birth, there is no family, no home and no community. You get back on a plane and you go home all alone with your baby in your arms, with no support.
This is what indigenous people have had to do for generations. It is a harmful and hurtful practice. Where is the sound of the newborn baby's cry? We have only silence. What does that mean for the health and wellness of your community? What has been lost?
In conclusion, access to indigenous midwives is imperative for the health outcomes of indigenous communities. Please consider these recommendations. We are tired of holding this up on our own. We know that to bring back birth is to bring back life. We know how to do this. We are strong, we know what we need, and we are brilliant.
I will conclude with a final ask by sharing a quote from the Women Deliver Indigenous Women's Pre-Conference.
We ask the government of Canada to measure the health and wellness of Indigenous women, girls and gender diverse people as an indicator of the health and wellness of the entire nation.
Thank you. Yaw?’kó
Josyane Giroux
View Josyane Giroux Profile
Josyane Giroux
2021-05-25 12:23
Thank you, Madam Chair.
Good afternoon, everyone.
I thank the committee for having me here today.
I am Josyane Giroux, a midwife and president of the Regroupement les Sages-femmes du Québec, or RSFQ.
The RSFQ is the professional association that represents more than 240 midwives working in the profession throughout the province. It works to develop the profession and its specificity within Quebec's health care system. In collaboration with the authorities and citizen groups, the RSFQ is committed to supporting access to midwifery services that meet the needs of the population.
The RSFQ also defends the free choice birthplace for women or people who give birth, in accordance with the standards of practice of the profession, as well as its philosophy of practice. The RSFQ is recognized by Quebec's department of health and social services as a spokesperson for midwives, and it negotiates their working conditions.
In Quebec, midwifery has been legally recognized since 1999. At the time, there were already six birth centres where 50 midwives worked. In 2008, the Quebec government published its perinatal policy, in which it pledged that, by 2018, midwifery services would be available in all regions of Quebec, that 10% of women and birth attendants could access services and that there would be a total of 20 birthing centres across the province.
According to 2019-20 data, only 4% of maternity follow-ups are carried out by midwives. Many regions still don't have access to services, and all the birthing centres have very long waiting lists, sometimes representing 30% of the number of annual follow-ups that can be offered by the teams.
We think there are three main reasons for this slow-motion development. First, the lack of recognition of the profession in general and its crucial role in reproductive and sexual health is a major issue. The midwifery model of practice, based on relational continuity, confidence in autonomy and respect for the physiological process of pregnancy and childbirth, is not recognized and valued.
In Quebec, the lack of knowledge of the profession heightens tensions and still leads to refusals of collaboration by medical teams. Ultimately, this remains an obstacle in the development of interdisciplinary services or projects that meet the needs of communities. The government has failed in its crucial role of demystifying and valuing the midwifery profession and its importance to the health system. On a day-to-day basis, it is midwives and families who are experiencing this pressure and are still fighting against misperceptions about their practice by clinical teams and the public.
The second major deficiency is the lack of workforce planning and workforce monitoring consistent with the objectives presented. Despite numerous representations in this regard by the RSFQ and other organizations, the warnings were not heard by the Quebec department of health social services. Midwives and families are the main victims of this lack of political leadership, as labour shortages are now affecting all midwives and forcing them to reduce services to the population. At this very moment, more than 20 contracts are unfilled in the province, and the opening of at least two birthing homes has been delayed.
In Quebec, the Université du Québec à Trois-Rivières is the only educational institution for the midwifery profession. It has a capacity of 24 students per year since the program opened in 1999, but is struggling to fill these places due to the lack of midwives to accompany trainees. It is essential that national consultation work involving the groups and community-based organizations directly involved, including citizen groups, be undertaken in order to find solutions and establish a clear plan.
The third very important element to consider in the analysis of the development of midwifery services and its slowness is the gender discrimination that midwives experience. The midwifery model, developed to meet the needs of women and pregnant persons and whose services are mainly aimed at women, is the source of indecent working conditions. Quebec midwives, at the end of their careers, earn 20% less than their comparable pay equity jobs. In Quebec, in 2019-20, the government paid only a total of $23,561,343 for midwifery services, including all operating costs. These working conditions, in addition to the context described above, lead to many early departures from the profession, exacerbating the shortage of human resources.
At the same time, the RSFQ operates solely based on membership dues, as the government does not recognize the importance of a strong professional association for supporting the development of the profession. Our association therefore struggles to meet all the needs, both those of its members in a global way and the support in the strategic work more than necessary.
Finally, it is with humility that I would like to add that the elements I've described are an exacerbated reality for women, pregnant people, and midwives from indigenous communities.
To date, there is no clear plan to provide families in these communities with access to midwifery services. Collaboration is at its starting point between governmental and legal organizations, communities, universities, and associations.
Our NACM colleagues and indigenous midwives will certainly be able to explain the issues in detail, but we believe it is crucial that the committee look at these matters.
In short, the RSFQ asks the provincial, territorial and federal governments to set up a campaign to demystify, promote and recognize the midwifery profession; invest in the establishment of a working committee for workforce and development planning in line with community needs; provide funding to professional midwifery associations, essential in supporting practice at all levels; recognize gender discrimination faced by midwives and adjust working conditions to end it; and prioritize work for the training, accessibility and development of midwifery services in indigenous communities.
Thank you, committee members, for your attention.
I will be happy to answer any questions you may have.
Ann Collins
View Ann Collins Profile
Ann Collins
2021-05-20 14:38
Thank you, Mr. Chair.
I am Dr. Ann Collins. Over the past three decades, I have taught family medicine, run a full-time family practice, served with the Canadian Armed Forces and worked for 20 years in nursing home care. Today it is my privilege to speak to you as president of the Canadian Medical Association, representing the sentiments and convictions of our 80,000 members.
Since inception in 1867, the Canadian Medical Association has advocated on matters of national health. The pandemic has showcased the enormous strengths and tenacity of the professionals who are at work delivering the nation's health care. It has also shown us how quickly our resources can be overwhelmed. Our country's recovery hinges on the recuperation of our health networks, because economic security cannot exist without health security.
Of the significant investments announced in budget 2021, we are pleased to see the attention paid to better care for our older adults and the communities most impacted by structural inequities. We can create a more dignified provision of care in long-term care facilities and support age-in-place strategies. We can address social determinants of health and invest in the battle against climate change. These commitments will fortify the equitable health security of Canadians.
The CMA especially welcomes the federal government's commitment to provide the provinces and territories with $4 billion through a one-time top-up to the Canada health transfer. This will support health systems with the capacity to clear the backlog of delayed procedures from the first and second waves. Bill C-25 is the lifeline to Canadians' immediate health needs. It must pass without delay.
Canada's job now is to address equitable access to primary care teams. Thirteen per cent of Canadians lack access to a family doctor or a family care team. That's an astonishing five million Canadians.
Primary care is the front door of health care. It is affordable, it fosters equity, and it will be essential in supporting Canada through and out of the pandemic, but the door is broken and off its hinges. It's struggling to remain upright.
The federal government has long expressed commitments to invest in the expansion of primary care, with good reason. Expanding primary care will help ensure that every Canadian has access to a family doctor or primary care provider. Every person in Canada, especially those most impacted by structural inequities, deserves the attention of a primary care team.
At present, much of our care exists in a vacuum. One discipline is completely severed from another. We don't accept divisiveness in any other aspect of life. How can we accept it in our health care system?
Primary care is a team-based model that is rooted in the networking of health professionals. They work in concert, just as a healthy body does. Primary care is the infrastructure with which to deliver mental health services and make virtual and remote care a reality. I think we can all agree that making a distinction between physical health and mental health is antiquated. The time has come to work towards parity in the resources needed to treat Canadians, regardless of their illness.
The future of sustainable health care is housed in the success of primary care. Our younger physicians and physicians in training seek to practise under this model. It is the means that will prevent greater illness and further strain on our health care systems. This is the time to support the future of medicine, the future of care, the future of Canadians' health.
The CMA appeals to parliamentarians to deliver this critical health care resource in budget 2021. There's still time. An infusion of federal funds in the amount of $1.2 billion over four years would expand the establishment of primary care teams in each province and territory.
We are equally intent on seeing an increase in federal funding for health care to the provinces and territories in the long term. It is the truest signal of collaboration.
Mr. Chair, let me thank the committee for the invitation. The CMA is grateful for the opportunity.
View Lindsay Mathyssen Profile
NDP (ON)
Thank you.
One of the things the Canadian government has a responsibility for doing is to enforce the Canada Health Act. Within that, of course, is reproductive services being available to women across Canada equally and fairly. Certainly the role of midwives has the ability to expand. For example, in Hamilton, Ontario, they are working with other doctors, ensuring that they have medications available so that women who need access to reproductive services can get them.
Can one of you, or all of you, quickly talk about expanding that role of midwives to ensure that women have that equal access under the Canada Health Act to reproductive services and health services?
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