Rare But Not Alone: What Canada’s New Drug Strategy Means for People with Pulmonary Arterial Hypertension

Living with a rare disease can feel like walking an unmarked path—isolated, uncertain, and overlooked. For those with pulmonary arterial hypertension (PAH), a life-threatening condition that affects the heart and lungs, that path can also be extremely expensive. Life-extending treatments often come with price tags that are well beyond reach for most.

Many people don’t realize rare diseases aren’t actually rare when you add them all up: one in twelve Canadians lives with one. While each condition may be uncommon, the experience of navigating life with a rare disease is something thousands of Canadians share.

In 2023, the Government of Canada introduced the National Strategy for Drugs for Rare Diseases, a step toward recognizing and supporting this often-overlooked community. With $1.4 billion earmarked over the next three years, provinces and territories will be able to expand access to life-saving treatments, speed up diagnoses, and improve screening. Beyond 2027, the government has committed to up to $500 million a year to continue this effort.

So what does this mean for people with PAH?

While none of the drugs listed on the initial “common list” specifically target PAH, treatments like sotatercept could still be funded under the strategy’s broader category of “other new and existing drugs for rare diseases.” That’s a crucial door opening for patients who are waiting—and hoping—for access.

This national focus brings greater visibility to rare diseases overall. More attention means more flexible systems and regulatory reviews, and potentially, more support for innovation and treatment access. For those living with PAH, it’s not just about one policy; it’s about a shift in how we value and care for people with rare diseases.

For the rare disease community, it’s encouraging to see Canada starting to take action. And you can help! The Canadian Organization for Rare Disorders is surveying rare disease patients in Canada, including pulmonary arterial hypertension patients and CTEPH patients, to find out more about the impact of living with a rare disease and to advocate for better policies.

Take CORD's survey on the impact of disease

Read more on the Government of Canada website