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Living with a rare disease can be a day-to-day challenge for patients and their families. The drugs used to treat these rare diseases can be ground-breaking and have life-changing impacts. However, they can come with a significant price tag. The federal government is currently consulting on the development of a national strategy for these medicines.

The goals of this strategy are to: 

improve access

ensure that the funding model is based on evidence-based decision-making

ensure that the health-care system remains sustainable

Drugs for rare diseases can be highly effective, but they come at a high cost. This is an important issue for employers who sponsor group benefits plans. Private health plans currently cover more than 26 million Canadians, including 13,000 with rare diseases. In 2020, the total spend by private plans on rare disease drugs alone was approximately $650 million in Canada.1 We expect these costs to increase with continued research and innovation. There’s clearly a lot at stake.

Sun Life supports the federal government’s work to improve access to drugs for rare diseases. We also believe it’s critical to consider the perspectives of all stakeholders in the health-care ecosystem. We need to ensure they’re at the decision-making table. Private payers and employers are important stakeholders in the ongoing provision of these drugs. During the recent government-led public consultation process, Sun Life made a submission to the federal government. Our submission reflects the interests of the industry – employers from across Canada, their employees and group benefits plan advisors. We’ll continue to be a part of the discussion as the process unfolds. 

About rare diseases and their associated drug costs

Rare diseases are complex conditions that can be life-threatening or seriously debilitating. Many of them are chronic. Most of them (80%) are genetically based, meaning they’re determined by a person’s genes. More than 50% of these diseases start in early childhood.

One of the foundations of a rare disease strategy is a clear definition of what constitutes a rare disease. And that’s a work in progress. Currently, Canada lacks a common, national definition. With a clear definition, we can better identify the scope of the issue – namely, how many Canadians have a rare disease and what drugs they need. This starting point is the foundation to develop a national strategy.

One potential definition is the one used by both the Canadian Organization for Rare Disorders and the European Union. They define a rare disease as one that affects fewer than one in 2,000 people.

While fewer than 10% of rare diseases have any treatment,2 the pipeline of rare disease drugs is growing due to advances in science. Researchers are gaining a better understanding of the pathology of these diseases and the genomic drivers of many conditions. That makes the issue of cost a growing concern. When treatments are available, they’re often extremely expensive. Costs can range from $100,000 to more than $2 million per patient per year, often for life. In 2019, more than half (56%) of rare disease treatments in Canada cost more than $200,000 per patient per year.

The key role of private insurers

As an industry, we’ve worked in partnership with employers to build a system that delivers prescription drugs to over 26 million Canadians in a fair and efficient manner.

Through the private system, employers can offer drug plans with a wide variety of tools to support employee health and well-being. They often use a robust benefit plan as a means to attract top talent. Employers can structure their plans, optimize health outcomes against costs, manage risk and support long-term plan sustainability. 

Employers also benefit from access to aggregate health data on their employee base. They can then use this information to develop health and wellness programs that support the specific needs of their organization. This in turn helps improve the overall health and productivity of the workforce. If private insurers no longer cover these drugs, there could be impacts to Canadian society. These include greater absenteeism and illness among the workforce and increased costs to the health-care system.

Any strategy should build on the strengths and assets of both the private and public systems. It should improve access to treatments without affecting the drug coverage, extended health benefits and programs that working Canadians and their families depend on today. 

Employers and employees also benefit from our strong relationships with patient groups. They include those in the mental health space and the broader pharmacy industry. We work to maintain these relationships to ensure that we’re up to date on new research and best practices. We share this information with our Clients to inform benefit plans and broader wellness efforts.

We also make ongoing investments in health-care innovations for Canadians with workplace prescription drug coverage. Recent examples include virtual care and pharmacogenomic testing. 

More than a funding model

Aside from a funding model, a national rare disease strategy should involve:

  • a National Expert Panel that would provide a consistent evidence-based approach and criteria to assess which drugs should be part of a rare disease formulary, 
  • a national data system and registry to support evidence-based decision-making, and
  • a single negotiator for the price of the medications on the formulary. 

It’s critical that all stakeholders work together to ensure plan sustainability across the entire system, while minimizing any disruption and confusion for employers and their employees.

What happens next?

Sun Life recognizes the significant impact that rare diseases have on many Canadians and their families. We’re confident there’s a solution to standardize access to the high-cost drugs they need. This would also alleviate the financial pressures felt by Canadians, provincial governments and employers.

We’re committed to being part of the solution and believe that private insurers can play an important role. Ideally, a national strategy would improve access without impacting the drug coverage and supports that working Canadians depend on today. 

The federal government will share the findings from the consultation in spring 2021. We’ll keep you informed on the progress of the strategy development. We’ll also continue to ensure the interests of employers and their employees remain front and centre.

We’re proud of the important role Sun Life and the insurance industry plays in providing rare disease drug coverage to some of Canada’s most vulnerable people. We believe this should remain an important role for insurers under a national strategy.

1Based on data collected from CLHIA member companies. The list of drugs used is based on the Patented Medicine Prices Review Board’s list of rare disease drugs (2018) plus additional drugs that have launched since 2018.

2Building a National Strategy for High-Cost Drugs for Rare Diseases: A Discussion Paper for Engaging Canadians, Government of Canada, 2021