Linda Wilhelm, 64, of Bloomfield, N.B., is planning a road trip to the United States. But it's not to go sightseeing or shopping. Wilhelm, who suffers from severe rheumatoid arthritis, hopes to get the updated Novavax COVID-19 vaccine, which won't be available in Canada as part of the fall vaccination campaign, unless provinces and territories order doses on their own.

Wilhelm, president of the Canadian Arthritis Patient Alliance and a member of the Canadian Immunocompromised Advocacy Network, says the protein-based vaccine is a better option for immunocompromised people like her than the more common Pfizer-BioNTech and Moderna mRNA vaccines. She says she feels "expendable" and urges the federal government to reconsider.

Less than two months ago, the network wrote to numerous federal, provincial and territorial officials, calling for improved access to Novavax and increased awareness. They contend many immunocompromised people have suffered adverse reactions following immunization with mRNA vaccines, but have responded well to Novavax, which is included in the National Advisory Committee on Immunization's fall guidance for people 12 and older.

Wilhelm says she has received six mRNA vaccines, both Pfizer and Moderna, and experienced longer and worse flare-ups of her rheumatoid arthritis with each one. "You're tired and you're sore and you feel like you have the flu all the time," said Wilhelm, who was diagnosed at age 23. When her third shot prompted a three-month flare, she started to think, "This is not real good," because the disease that ravaged her body for decades and resulted in 14 joint replacements or fusions, including both knees, both hips and both shoulders, had been stable for about 20 years. Prior to that, she was largely bed-bound and required a wheelchair. But the married mother of three and grandmother of six was "terrified" of getting COVID, so she kept getting mRNA shots, with her latest flare lasting more than eight months and affecting her left elbow — one of only two healthy joints she had left. In addition, her hands, while badly gnarled by the disease, never used to hurt. After the boosters, however, she suffered a "gnawing, uncomfortable, horrible pain" that kept her awake at night.

Wilhelm heard through a friend that immunocompromised people who received the Novavax vaccine had fewer adverse reactions. But she contracted COVID in October 2023 before she found a pharmacy that carried it. She was "very ill" for two months, and in her weakened state ended up getting RSV, respiratory syncytial virus, for about another two months, but recovered.

In March, Wilhelm began her search for Novavax again. After being referred back and forth between pharmacies and the Department of Health, she received a dose in mid-April in Saint John — about 45 minutes from her home, with no adverse reaction. She wants to stick with Novavax, but that won't be an option here, Health Canada confirmed to CBC News.

Novavax in Canada: A Limited Availability

Canada will be receiving up to 19 million doses of mRNA vaccines, pending regulatory authorization, said spokesperson Nicholas Janveau. Health Canada is currently reviewing vaccines from Pfizer and Moderna that target the KP.2 strain, he said. The latest strains of Omicron circulating in Canada and the U.S. have names that start with KP. Health Canada is also reviewing a vaccine from Novavax that targets the earlier JN.1 strain. "However, Canada's current contract with Novavax only provides access to domestically manufactured vaccines, which Novavax has been unable to confirm for the 2024/25 season," Janveau said. If Novavax's JN.1 vaccine does get approved, provinces and territories "may choose to procure independently from Novavax from supply produced in India for their fall vaccination campaigns," he added.

But "New Brunswick and other provinces have investigated and are unable to find other options to procure this vaccine," according to Department of Health spokesperson Sean Hatchard. "The amount of vaccine that needed to be ordered to procure it independently was too large based on the minimal demand in the province," he said.

Low Demand, High Stakes

Demand for Novavax has been "very low" across the country, according to the Health Canada spokesperson. Of the 125,000 Nuvaxovid XBB.1.5 vaccines ordered in 2023, only 5,529 doses have been administered, as of June 30, 2024, he said. Wilhelm contends uptake has been low because many people either don't know about the protein-based vaccine, or have had a hard time trying to get it. About 14 per cent of Canadians aged 15 or older have a compromised immune system, as of 2020, according to Statistics Canada. That's a "significant portion" of the population, Wilhelm said.

Immunocompromised people can use either type of vaccine, said Janveau. "Canada's National Advisory Committee on Immunization (NACI) no longer preferentially recommends one vaccine type over another." Wilhelm suspects mRNA vaccine reactions in immunocompromised people and others are underreported, due in part to the "abysmal" reporting system that does not include an online option. In addition, many people may not think to file a report, she said, noting that even she, as an advocate, failed to report her reactions until recently.

A Difficult Choice

Wilhelm says she's trying her best to stay healthy and not cost the health-care system money. "But [if] the government doesn't give me the tools I need to do that, then what do I do?" Her only option, she said, is to drive to Maine — either three hours return to Calais, or six hours return to Bangor, depending on availability. Wilhelm expects it will cost her about $180 US, or $243 Cdn, which the province won't cover, but says it's a small price to pay compared to the risk of another long flare-up, or getting COVID. Still, she hopes the government will reverse its decision.

The limited availability of Novavax in Canada highlights a crucial dilemma facing immunocompromised individuals who have experienced adverse reactions to mRNA vaccines. While NACI no longer recommends one vaccine type over another, the lack of access to Novavax for the fall vaccination campaign leaves many vulnerable Canadians with limited options for protection against COVID-19. As Wilhelm's experience demonstrates, the potential for severe health complications from mRNA vaccines can have a significant impact on quality of life and healthcare costs. With the upcoming fall vaccination campaign approaching, the call for increased awareness and availability of Novavax for immunocompromised individuals continues to resonate, urging the government to reconsider its current stance and ensure equitable access to the vaccine for all Canadians.