New Democrats reintroduce bill to create a formal plan for helping people get early diagnosis, screening and treatment for rare medical conditions
Ontario should have a formal strategy to help its residents who suffer from rare and unusual diseases. The concern has been raised by official opposition health critic France Gélinas, the MPP for Nickel Belt.
Gélinas has reintroduced a private members bill calling on the Ministry of Health to establish a strategy for people who are dealing with a rare disease yet do not get easy access to things such as early diagnosis, screening and treatment.
The bill is co-sponsored by Hamilton Centre NDP MPP Dr. Robin Lennox, the opposition critic for Mental Health, Addictions and Primary Care.
Their proposed law, Bill 59 calls on the Conservative government to establish a provincial strategy and implement the 19 recommendations put forward by the Rare Diseases Working Group in their 2017 report.
Rare diseases impact nearly one in 12 Canadians, meaning more than 1.3 million Ontarians are dealing with a rare disease, said the NDP news release.
From disease prevention to diagnosis and treatment, every step is difficult leaving too many people to face debilitating impact on their own, said the release.
If passed, Bill 59 would help improve early diagnosis, screening and treatment including access to existing as well as new and emerging medication, said the release.
“Patients can go through years of trying to get appointments with specialists before a correct diagnosis is even reached,” said Gélinas.
“Because of the delays and barriers people face when navigating rare diseases, their physical and mental health is often severely impacted. This is why we are calling on the government to implement the strategy that has already been studied and defined by the Rare Disease Working Group.” said Gélinas.
She added that Ontarians living with rare diseases deserve comprehensive, integrated, and equitable access to health care. “We need a government that is willing to put these recommendations into place instead of turning their back on the lives of so many Ontarians.”
MPP Lennox endorsed the plan.
“Right now, family doctors are having to go above and beyond to advocate for their patients with rare or unspecified diseases to be seen and recognized within existing health structures. The proposed provincial Rare Disease Strategy would reduce this burden on primary care providers by ensuring that there is a place and a pathway for everyone to be able to get the care they need,” said Lennox.