Advocacy groups applaud expanded access to medicine for rare lung disease

Five provinces have followed Quebec’s lead in providing public funding for the treatment

Advocacy groups applaud expanded access to medicine for rare lung disease

The Pulmonary Hypertension Association of Canada (PHA Canada) and Scleroderma Canada are praising Alberta, Saskatchewan, Manitoba, Ontario, and Newfoundland and Labrador for joining Quebec in providing public funding for Uptravi.

The drug, also known as selexipag, is used for the treatment of a potentially fatal disease called pulmonary arterial hypertension (PAH). A rare but very complex condition, it is defined by high blood pressure in the lungs, which leads to enlargement and weakness in the right side of the heart. It is a common complication of systemic scleroderma, a chronic hardening and thickening of the skin and internal organs.

“We commend the provinces of Alberta, Saskatchewan, Manitoba, Ontario and Newfoundland and Labrador, for joining Quebec and making Uptravi accessible through public funding,” said Dr. Sanjay Mehta, MD, FRCPC, FCCP, and Board Chair of PHA Canada.

Uptravi was approved by Health Canada in 2016, which made it the third new treatment for PAH to be approved in recent years. Later that year, the Common Drug Review (CDR) also recommended public funding for Uptravi in Canada. The latest moves by provinces, which has given 85% of Canadians publicly funded access to the drug, came as a result of recently concluded pricing negotiations by the pan-Canadian Pharmaceutical Alliance (pCPA). 

There is no cure for PAH, and the prognosis for Canadian patients remains poor despite treatments currently available. The average adult PAH patient’s survival period following diagnosis is estimated at five to seven years; the outlook decreases to three years for those affected by scleroderma-associated PAH (SSc-PAH).

“[O]ur work will not be done until the balance of patients in Canada have timely and equitable access to optimal treatment options,” Mehta said.


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