Throughout the COVID-19 pandemic, there have been numerous examples of how systemic racism and racist stereotypes stigmatized those who contracted and transmitted the virus. This systemic racism predates the pandemic, an...Throughout the COVID-19 pandemic, there have been numerous examples of how systemic racism and racist stereotypes stigmatized those who contracted and transmitted the virus. This systemic racism predates the pandemic, and is itself endemic in healthcare service, delivery and education as evidenced by the treatment of Black students, residents and doctors. While public health officials, healthcare providers and medical schools may claim to be colour-blind, the documented experiences of Black and Indigenous people and people of colour - particularly those who are queer or trans - demonstrate otherwise. In this paper, the author focuses on the experiences that Black people have in healthcare settings and reflects on what has been revealed during the COVID-19 pandemic, including how systemic historical, contemporary and ongoing anti-Black racism continues to negatively impact health outcomes.
Canada is often held out by scholars as the exception to a disheartening global pattern that suggests that high levels of racial diversity in a society are incompatible with support for generous social policies (Banting...Canada is often held out by scholars as the exception to a disheartening global pattern that suggests that high levels of racial diversity in a society are incompatible with support for generous social policies (Banting et al. 2006). The explanation for this pattern is that it is a real phenomenon (rather than an artefactual one) and it can be chalked up to racist motivations that cause powerful racial groups (whites and those non-white people who ally with whites) from endorsing policies that will benefit Black and other non-white groups (Alesina et al. 2001). One of the social policies that we are most often lauded for maintaining is the Canada Health Act (1985), which mandates that the vast majority of physician and hospital services are accessible free of charge. The prevailing discourse in Canada has been that the Canada Health Act (1985) ensures equal access to healthcare among all Canadians. In addition, polling data suggest that the vast majority of Canadians believe racism is a terrible thing (Bricker and Chhim 2020). However, cases such as that of Joyce Echaquan (Nerestant 2021) who died at a hospital in Saint-Charles-Borromée, QC, as nurses looked on and mocked and demeaned her with their words, or Leonard Rodriques (Allen 2020) who was turned away from an emergency room in Toronto during the COVID-19 pandemic and died shortly after, call into serious question the narratives of an egalitarian and benevolent system, in the context of a society that publicly endorses anti-racism.
This commentary calls on individuals, researchers and leaders to reconsider the sustained and ongoing impact of colonialism with respect to our individual commitment to relationships in a context where policy alone will...This commentary calls on individuals, researchers and leaders to reconsider the sustained and ongoing impact of colonialism with respect to our individual commitment to relationships in a context where policy alone will not address the issues we face. The author intends to recognize people's individual power and accountability in their relationship with Indigenous Peoples and describes how relationships, in the end, will drive the change that is needed. The author raises the need for distinctions-based legislation to carry and convey the intention for change. Individuals empowered by the legislation are urged to use their personal leadership to address racist policies and services. This paper is a call to make the commitment to being in relationship with Indigenous People and using levers within their scope of practice to address discrimination and racism against Indigenous Peoples in healthcare.
In Canada, there is evidence that Indigenous Peoples have experienced systemic and medical racism directly or indirectly. This commentary discusses the prejudice and racism evident in healthcare throughout history. The n...In Canada, there is evidence that Indigenous Peoples have experienced systemic and medical racism directly or indirectly. This commentary discusses the prejudice and racism evident in healthcare throughout history. The narrative then shifts to address medical professionals who do not provide quality treatment, and a guideline is provided for Indigenous patients and clients to enable them to file complaints with licensing boards. The intention is for healthcare professionals to incorporate cultural competency, cultural safety and cultural humility into their practices and, if possible, create a structure that will allow Indigenous patients to voice their concerns.
Health inequity among Indigenous populations continues to widen despite advances in Indigenous health research. Under Canada's esteemed universal healthcare system, Indigenous populations continue to experience much poor...Health inequity among Indigenous populations continues to widen despite advances in Indigenous health research. Under Canada's esteemed universal healthcare system, Indigenous populations continue to experience much poorer health outcomes due to the intersectional legacies of colonialism and racism. In this commentary, we reflect on structural, systemic and service delivery racism at all levels of care, which are deeply embedded in historical, political, institutional and socioeconomic policies and practices that continue to perpetuate harm and genocide of Indigenous Peoples. We call for immediate action to re-establishing epistemic justice and reframing Indigenous knowledge systems in nursing practices, policies, research and education as the starting point in counteracting systemic racism.
Anti-Indigenous racism is prevalent in Canada, especially within healthcare systems. Consequences are catastrophic, including deaths of Indigenous patients. Systems change and critical education guided by the Indigenous...Anti-Indigenous racism is prevalent in Canada, especially within healthcare systems. Consequences are catastrophic, including deaths of Indigenous patients. Systems change and critical education guided by the Indigenous Peoples and research into how racism operates within healthcare settings are needed. In Alberta, promising initiatives are under way, including a First Nations-led initiative identifying racism and colonialism as key health determinants, novel experiential education, transformative education for senior health leaders and reframing health system measures to reflect Indigenous Peoples' perspectives. The time is now for comprehensive action toward eliminating racism within healthcare systems and fostering Indigenous health systems safety. Indigenous lives depend on it.
This article presents a portrait of some of the challenges that Inuit encounter in contemporary healthcare systems. It explores the distinctive constitutional and legal framework that encompasses Inuit in Canada and the...This article presents a portrait of some of the challenges that Inuit encounter in contemporary healthcare systems. It explores the distinctive constitutional and legal framework that encompasses Inuit in Canada and the important work being done by Inuit entities to describe Inuit social determinants of health.
Healthcare policy and decision makers in Canada have the power to address the persistent inequities experienced by Indigenous Peoples. Bold, immediate actions are necessary to address the varying manifestations of system...Healthcare policy and decision makers in Canada have the power to address the persistent inequities experienced by Indigenous Peoples. Bold, immediate actions are necessary to address the varying manifestations of systemic racism, the ongoing denial of racism and the negative impacts on access to care and health outcomes. The perspectives presented in this issue of HealthcarePapers highlight a clear imperative: much more must be done at multiple levels to make healthcare systems safer for Indigenous Peoples. The actions discussed in this introductory paper reflect key, evidence-informed strategies to guide healthcare policy and decision makers in Canada and, potentially, other jurisdictions.
The comments provided by Rawson and Adams (2023) miss the mark of our articles (Sirrs et al. 2023a, 2023b). We agree that the patient perspective is critical and that patients with "rare diseases have a right to healthca...The comments provided by Rawson and Adams (2023) miss the mark of our articles (Sirrs et al. 2023a, 2023b). We agree that the patient perspective is critical and that patients with "rare diseases have a right to healthcare and have huge unmet needs …" (p. 7). However, we challenge Rawson and Adams' (2023) thesis that keeping drug prices higher in Canada than in most other countries would solve the problem of access to therapies for rare diseases that have no available treatment.
Sirrs et al. (2023a) discuss what they consider "explosive growth" (p. 11) in the research and development (R&D) and commercialization of expensive drugs for rare diseases (DRDs). They contend that the "status quo is no...Sirrs et al. (2023a) discuss what they consider "explosive growth" (p. 11) in the research and development (R&D) and commercialization of expensive drugs for rare diseases (DRDs). They contend that the "status quo is no longer an option" (Sirrs et al. 2023b: 75), so it is critical to drastically reduce the prices of DRDs and/or ration access.
Sirrs S, Anderson H, Jiwani B
… +5 more, Lun E, Nakagawa B, Regier D, Rizzardo S, McFarlane A
Healthc Pap
· 2023 Jan · PMID 36692920
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Expensive drugs for rare diseases pose unique economic, evidentiary and ethical challenges, and these will continue to escalate unless steps are taken urgently to address these challenges. We propose concrete actions tha...Expensive drugs for rare diseases pose unique economic, evidentiary and ethical challenges, and these will continue to escalate unless steps are taken urgently to address these challenges. We propose concrete actions that all stakeholders (federal and provincial/territorial governments, patients, healthcare providers, the public and drug manufacturers) could take now as a first step toward enhancing sustainability in the use of innovative (albeit expensive) therapies within our publicly funded healthcare system.
Healthc Pap
· 2023 Jan · PMID 36692919
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Significant challenges are associated with the availability of and access to treatments for rare diseases. In this issue, Sirrs et al. (2023) frame challenges in terms of evidence, economics and ethics and describe how t...Significant challenges are associated with the availability of and access to treatments for rare diseases. In this issue, Sirrs et al. (2023) frame challenges in terms of evidence, economics and ethics and describe how they manifest in the Canadian context. This short response paper argues that although interesting initiatives exist internationally to deal with some of these challenges, a plug-and-play approach will not suffice given the particularities of the Canadian system. Rather than seeking international lessons on how to deal with Canadian challenges, the emerging interdisciplinary framework of social pharmaceutical innovation is advanced here as a whole-systems approach that stands to address interconnected components of the rare disease ecosystem, and in doing so, a made-in-Canada approach is advocated for.
Healthc Pap
· 2023 Jan · PMID 36692918
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Expensive drugs for rare diseases (EDRDs) pose challenges for regulatory and reimbursement decision makers. Managed access agreements (MAAs), conditional reimbursement schemes that use a variety of price and evidence gen...Expensive drugs for rare diseases (EDRDs) pose challenges for regulatory and reimbursement decision makers. Managed access agreements (MAAs), conditional reimbursement schemes that use a variety of price and evidence generation mechanisms to support value-based decision making, have the potential to address the evidentiary, economic and ethical issues associated with EDRDs. Several jurisdictions have successfully used MAAs to manage budget impact and evidentiary uncertainties, demonstrating the promise of this approach. We comment on the feasibility of adopting MAAs in Canada to address challenges associated with EDRDs. Adopting MAAs in the Canadian context requires attention to Canada's federated healthcare and drug coverage system and will require investing in robust data infrastructure and governance systems.
Healthc Pap
· 2023 Jan · PMID 36692917
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Patient advocacy groups can push regulators to approve and pay for expensive drugs despite weak evidence of efficacy and/or safety. Advocacy organizations that critique high prices for rare diseases are less publicized b...Patient advocacy groups can push regulators to approve and pay for expensive drugs despite weak evidence of efficacy and/or safety. Advocacy organizations that critique high prices for rare diseases are less publicized but can also influence policy. The funding and relationships many groups have with the pharmaceutical industry may contribute to patient advocates' differing perspectives, but the leaders' values and experiences are an overlooked factor. We need to understand the dominant public-private partnership model of patient advocacy, its historical roots, justification and how key advocacy actors respond to it if we are to advance policies that will contain expensive drugs for rare diseases.
Healthc Pap
· 2023 Jan · PMID 36692916
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Cancer medicines comprise the largest proportion of expensive drugs for rare diseases (EDRDs). The US Orphan Drug Act (ODA) (Office of Inspector General, Department of Health and Human Services 2001) encourages pharmaceu...Cancer medicines comprise the largest proportion of expensive drugs for rare diseases (EDRDs). The US Orphan Drug Act (ODA) (Office of Inspector General, Department of Health and Human Services 2001) encourages pharmaceutical manufacturers to develop medicines for rare diseases through a range of financial incentives, which has shifted the development of cancer medicines to rare cancer subtypes. Although certain medicines approved through the ODA have revolutionized cancer treatment, only half demonstrate added therapeutic benefit compared to existing alternatives. Canadian regulators should ensure that cancer medicines that receive fast-track approval through the Health Canada Notice of Compliance with conditions offer benefit to Canadian patients. Furthermore, payers might engage in methods for reassessment and renegotiations over the medicines' lifespan.
Healthc Pap
· 2023 Jan · PMID 36692915
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In this issue, Sirrs and colleagues (2023) provide a very informative picture of the value and cost of policies to promote orphan drug development. They examine the influence of these policies on pharmaceutical research...In this issue, Sirrs and colleagues (2023) provide a very informative picture of the value and cost of policies to promote orphan drug development. They examine the influence of these policies on pharmaceutical research and development, the proliferation of rare diseases, the prohibitive costs and the loopholes of these policies. One section of the paper identifies the ethical issues and proposes a response to the challenge of integrating the utility perspectives of pharmacoeconomic analyses with those of treatment access claims formulated from a deontological perspective. Their proposal is essentially that of procedural ethics. I enter the ethical debate obliquely by looking at the rule of rescue phenomenon observed by Albert R. Jonsen (Jonsen 1986). I explore the twists and turns of the discussion on this subject and assume the perspective of authors who give significant weight to the symbolic value of respecting it. In conclusion, I take up the symbolic question by arguing that the challenge of preserving the aura of legitimacy that must surround political decisions sometimes requires distancing oneself from sound recommendations, which, even if they are the result of an ideal procedure, will nevertheless be perceived as unjust and insensitive.
Healthc Pap
· 2023 Jan · PMID 36692914
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Canadian and foreign governments are struggling with determining whether to reimburse expensive drugs for rare diseases. The problem is that although insurers want to offer fair access to medicines for patients with rare...Canadian and foreign governments are struggling with determining whether to reimburse expensive drugs for rare diseases. The problem is that although insurers want to offer fair access to medicines for patients with rare diseases, the drugs are often priced far above normal cost-effectiveness thresholds. This leaves insurers with no tools to determine how much to pay. This article notes one reasonable standard: prices should not, in these circumstances, allow for profiteering by innovative companies.
Healthc Pap
· 2023 Jan · PMID 36692913
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In Canada, the focus on value for money and evaluating efficacy according to traditional ways has presented challenges to the funding of drugs for rare diseases (DRDs). This commentary validates and extends two worthy re...In Canada, the focus on value for money and evaluating efficacy according to traditional ways has presented challenges to the funding of drugs for rare diseases (DRDs). This commentary validates and extends two worthy recommendations from the lead paper in this issue of (Sirrs et al. 2023). The paper's first recommendation, for a pan-Canadian approach for collecting evidentiary data, is critical. In the commentary, I add to this finding by suggesting that we enable patients to track and measure their response to treatment through data capture. The second recommendation is a pan-Canadian framework for funding DRDs. I extend the recommendation with an argument for public and private payer guidance as well as a fair and transparent funding framework solely for DRDs.
Sirrs S, Anderson H, Jiwani B
… +6 more, Lynd LD, Lun E, Nakagawa B, Regier D, Rizzardo S, McFarlane A
Healthc Pap
· 2023 Jan · PMID 36692912
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Publisher ↗
There has been explosive growth in the market for expensive drugs for rare diseases (EDRDs). Traditional standards of evidence are not achievable for rare diseases, so lower standards are applied. The price of these drug...There has been explosive growth in the market for expensive drugs for rare diseases (EDRDs). Traditional standards of evidence are not achievable for rare diseases, so lower standards are applied. The price of these drugs is extremely high. This combination of lower standards and higher prices make EDRDs attractive to manufacturers. Legislation designed to incentivize drug development for rare diseases contains loopholes that drive prices up worldwide. Canada compounds those problems with a complex network of agencies that impede communication between those providing market authorization and those purchasing drugs. Drug pricing is not related to metrics like investment or value, but rather willingness to pay. Without high-quality evidence to assess value, we inadvertently prioritize patients with rare diseases over those with common diseases, creating conflict among ethical principles such as social utility, justice and the rule of rescue. Lack of transparency over what is being funded and for whom makes it hard to mitigate challenges through effective policy development. We review the evidentiary, economic and ethical issues around EDRDs and ways to move forward, including enhanced transparency and the development of high-quality evidence to ensure that we do not pay for drugs that do not work.
Healthc Pap
· 2023 Jan · PMID 36692911
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Publisher ↗
This issue of on expensive drugs for rare diseases (EDRDs) is very timely. According to the recently released Patented Medicine Prices Review Board's 2021 annual report, EDRDs have gone from 1.7% of pharmaceutical expen...This issue of on expensive drugs for rare diseases (EDRDs) is very timely. According to the recently released Patented Medicine Prices Review Board's 2021 annual report, EDRDs have gone from 1.7% of pharmaceutical expenditures in 2012 to 12.2% in 2021, with a compound annual growth rate between 2012 and 2021 of 31.7% compared to 6.0% for all prescription medicines (PMPRB 2022).