More than 2,000 letters urge Canadian health authorities to make all pulmonary arterial hypertension (PAH) therapies available through public funding so that new life-extending medications are accessible to all who need them.
The letters were signed by PAH patients, their caregivers, family members, and friends and will be delivered to premiers and health ministers across Canada, including Ontario, Quebec, Manitoba, and Nova Scotia, according to the Pulmonary Hypertension Association of Canada and Scleroderma Canada.
PAH is a frequent complication of scleroderma, which involves chronic, progressive thickening of the skin and internal organs. In people with PAH, pathological changes in the right-heart ventricle lead to volume overload and severe heart failure.
“Since my diagnosis with scleroderma, and more recently PAH, my life has become quite limited as I am not able to work or live on my own, and the treatments I have been taking are no longer enough,” Bronwyn Lawton, 33, said in a press release.
Lawton lives with her parents in Winnipeg, Manitoba, and was recently hospitalized. She said she cannot afford a much-needed new medication without public funding. “I desperately hope that governments across Canada hear our urgent plea,” she said.
PAH still has no cure. The prognosis for PAH patients remains poor, despite modest improvements with newer medications in recent years. The average survival post-diagnosis in adult PAH patients is estimated at five to seven years, and only three years for those with scleroderma-associated PAH. Patients don’t have time to wait for these necessary, life-extending therapies to be made available through a lengthy public-funding process.
“Around 15 to 20 years ago, the average PAH patient would live for about two years, which is as bad as many forms of cancer. Now, thanks to the many treatment advancements, patients are living longer and healthier lives,” said Dr. George Chandy, a respirologist at the University of Ottawa Heart Institute.
“However, there are still patients who are unable to access these treatments through public funding, leaving them unwell,” he said. “The individualized nature of PAH means that patients must have publicly funded access to all approved and effective treatment options in order to improve and extend their lives.”
In January 2016, Uptravi (selexipag), developed by Actelion, became the third new PAH therapy approved by Health Canada in recent years. Public funding for Uptravi was recommended in October 2016 for patients whose PAH is not adequately controlled with a first- and second-line therapy.
While negotiations are underway through the pan-Canadian Pharmaceutical Alliance (pCPA), Uptravi is still not available to PAH patients who depend on public funding. Of the three new medications for PAH, Opsumit (macitentan), also from Actelion, is the only one with public funding, but is available only in Quebec.
“PAH patients have high hopes for Uptravi as a new treatment option to slow the progression of this rare but very complex and serious lung disease,” said Anna McCusker, executive director of Scleroderma Canada.
McCusker said the delivery of the 2,000 letters offers hope that “the voices of so many Canadians will be heard by decision makers, and that patients will immediately have access to a treatment option that is urgently needed by some, and seen as a last resort by others.”