Pulmonary arterial hypertension (PAH) is a devastating disease that can rob children and adults of the ability to breath properly. Fortunately, there are treatments available to help patients manage their disease but like many rare diseases, the treatments are expensive and the clinical trial data supporting the treatments may be good but not great.

As a result, patient input into the regulatory process is essential for making sure the various health ministries and other regulatory bodies are fully informed about the limited treatment options and the burden of the disease.

One advocacy group that is very good at sharing those patient stories is the Pulmonary Hypertension Association of Canada (PHA Canada). Recently, we talked with the executive director of PHA Canada, Jamie Myrah, who shared their experience in working with the Ontario government to review their criteria for reimbursement for PAH treatments.

Myrah said, “We pushed and pushed to make sure the patients’ stories were heard.”

The review committee included two PH physicians but it was important to PHA Canada that a patient representative also be included in the decision-making process. Myrah noted that by politely pressuring the committee to include a patient representative, the committee became more receptive to working with the advocacy group. In the end, while a patient representative was not formally included, both a patient and the chair of PHA Canada (also a PH physician) were invited to present to the committee. “Which would never have happened if we hadn’t pushed for that. Also, because they realized that was a compromise, we were also able to get a separate face-to-face meeting with Ministry staff,” noted Myrah.

The patients’ voice is commonly used by PHA Canada at such meetings and Myrah noted that it is important that the patients and caregivers have a story to tell.  “Learning how to tell those stories and tell them well,” noted Myrah, is essential. Myrah believes that part of her job is to help patients and caregivers craft their stories so that decision makers can see the bigger picture with respect to the disease, rather than just relying on statistics from a clinical trial.

Myrah said, “It certainly takes a lot of patience and perseverance to see these processes through, but you have to view it as a long-term investment.”

For more information about PAH, visit www.phacanada.ca

The photo from Queen’s Park Advocacy Day, held in December 2015, was provided by PHA Canada.