Approximately 85 percent of Canadians with pulmonary arterial hypertension (PAH) and systemic sclerosis (SSc) now have access to Actelion’s therapy Uptravi (selexipag) through the country’s publicly funded prescription system.
This action follows the conclusion of negotiations about the drug’s price by the pan-Canadian Pharmaceutical Alliance (pCPA) — a group that represents Canada’s provinces in trying to regulate drug costs — and its acceptance by the governments of Alberta, Saskatchewan, Manitoba, Ontario, Newfoundland and Labrador, and Quebec.
“The voices of the PAH and scleroderma communities have been heard. We commend the provinces of Alberta, Saskatchewan, Manitoba, Ontario and Newfoundland and Labrador, for joining Quebec and making Uptravi accessible through public funding,” Sanjay Mehta, MD, said in a press release. Mehta is director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Ontario, and board chair of PHA Canada.
“While these provinces have recognized the highly complex and serious nature of PAH, our work will not be done until the balance of patients in Canada have timely and equitable access to optimal treatment options,” Mehta said.
In January 2016, Uptravi became the third new treatment for PAH approved by Health Canada in recent years. Nine months after that ruling, the Common Drug Review (CDR) recommended the drug should be publicly funded for patients whose disease is not adequately controlled with first- and second-line therapies. But the process to make Uptravi accessible to all PAH and scleroderma patients, regardless of their financial situation or private insurance coverage, has been delayed by lengthy pricing negotiations.
Scleroderma Canada and PHA Canada, along with Fondation hypertension artérielle pulmonaire Québec (Fondation HTAPQ) and Sclérodermie Québec, have joined forces to improve the lives of those with PAH, advocating for prompt approval of public funding for PAH treatments.
“The severe and progressive nature of pulmonary arterial hypertension means that patients must have timely access to all Health Canada-approved treatments for PAH, in order to receive the individualized care they require to improve and extend their lives,” said Dale Lien, MD, professor of medicine, and director of the pulmonary hypertension program at University of Alberta.
“We are so pleased to now be able to tell our patients that Alberta has joined the expanding list of provinces providing public funding for Uptravi,” Lien said.
Approximately 10 percent of scleroderma patients develop PAH due to the thickening of connective tissue around blood vessels. If left untreated, this can lead to serious heart problems, and even heart failure.
“Those living with PAH or SSc-PAH do not have time to wait for necessary treatment. Take my mother’s experience, for example; she lost her battle with SSc-PAH in November 2017 while waiting for publicly funded access to treatment,” said Stephanie Keyes, daughter and SSc-PAH caregiver from Gananoque, Ontario.
“As a family, we consider her journey to be her legacy. Our hope is that sharing her story will benefit others who are also pleading for treatments not accessible to them through their provincial drug plans. For many suffering with this condition, these treatments are a matter of life or death,” Keyes added.
PAH has no cure, and despite the available treatments, the average survival after a PAH diagnosis is estimated to be five to seven years; for those affected by SSc-PAH the survival estimate is only three years.