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Imagine that a few pills a day could transform an employee’s life — that they could get back to work, perform better, have fewer sick days, be more present and avoid continuously deteriorating health.

Now, what if this life-changing medicine is for a rare disease that isn’t covered under the employee’s benefits plan because of cost? Would their employer simply tell them the drug is too expensive or that long-term disability, even with its high cost, is a better option for the company than giving the employee a chance to flourish?

Recent breakthrough treatments have the potential to change the lives of many people who live with rare diseases. But these benefits sometimes come with costs that are substantially more than any individual or family could pay on their own.

Read: Rare disease drugs strategy, standard coverage in CLHIA’s 2020 budget wish list

One good example is the cystic fibrosis drug Trikafta. Advocates have fought hard to have this drug covered by Canada’s public drug plans and most of the country’s largest private insurers have added it to their drug lists. Unfortunately, some of the group benefits plans they insure don’t provide access to the medication. Some employers have excluded it from their coverage, while others insist on a 90 per cent price reduction from the manufacturer. In addition, some plans are halting coverage of other cystic fibrosis-related medications if they grant access to Trikafta and creating a dangerous situation for plan members.

Employees with plans that do cover rare diseases may still face massive copays, sometimes running up against their lifetime maximum in just a few years. This leaves them uninsured and forced to turn to the public system, which they can only do if they qualify, meet any required income test and are able to pay an annual deductible over and above what they already pay for private insurance.

Read: 2022 Drug Plan Trends Report: High-cost drugs, DEI shaping drug plans

Some individuals have found themselves in the difficult position of having to sacrifice their own or their child’s health care by removing them from private insurance in order to qualify for public coverage, losing other benefits such as dental care and paramedical services.

Given the challenges Canada is facing when it comes to hiring, employers should be focused on enabling their employees to continue to work and stay healthy. Leveraging opportunities such as partnering on a national rare disease strategy or developing new risk-sharing models for drugs for rare diseases would benefit both plan sponsors and members.

Too many Canadians with rare diseases have died while waiting for the medicines they need. It’s time for benefits providers to step up to prevent employees with rare diseases from slipping through the cracks.

Kelly Grover is the president and chief executive officer of Cystic Fibrosis Canada.