NDP repeats call to establish comprehensive province-wide rare disease strategy

QUEEN’S PARK – Ontario NDP Shadow Minister for Health France Gélinas (Nickel Belt) and for Mental Health, Addiction and Primary care Dr Robin Lennox (Hamilton Centre) announced the re-introduction of the Rare Disease Strategy Act, 2025. This Bill calls on the 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 1 in 12 Canadians over 1.3 million Ontarians are dealing with a rare disease. From disease prevention to diagnosis and treatment, every step is difficult leaving too many people to face debilitating impact on their own.

If passed, this Bill will help improve early diagnosis, screening and treatment including access to existing as well as new and emerging medication.

“Patients can go through years of trying to get appointments with specialists before a correct diagnosis is even reached,” stated MPP 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. 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 added "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"

Quotes:

"My daughter had to have emergency surgery for her cystic fibrosis just seven hours after she was born. We learned about a ‘miracle drug’ for her condition after she came home from the hospital and had to wait five years before that drug was even approved for use. The impact was immediate and life changing.

We are lucky that we were able to access this drug for our daughter through our employee benefits. But not everyone is this lucky, drugs like these can cost people some of the highest drug deductibles in the country. The Ontario government must act immediately to improve access to these drugs."

-Jack Segal, Parkdale – High Park resident whose daughter Clara lives with cystic fibrosis

"Imagine for a moment that you are vomiting 20 times a day, suffering from unbearable pain to the point you can barely hold your head up, and you have been able to secure an appointment with a specialist, only to have to educate that specialist on your condition, and how it affects you. Before you even walk into the specialist’s office, there is an impression of you, and that what you are suffering from is all in your head. This is what EDS patients, and others with rare diseases live with daily as citizens of Ontario.

When will Ontario step up and take responsibility for its citizens with rare diseases who need support such as neurosurgery to avoid permanent disability and death?”

-Emily Wright, Toronto – St. Paul’s resident who suffers from a rare disease called Hypermobility Spectrum Disorder, which is under the umbrella of Ehlers Danlos Syndrome