NDP calls to establish comprehensive province-wide rare disease strategy

QUEEN’S PARK – Ontario NDP MPPs Bhutila Karpoche (Parkdale – High Park), Jill Andrew (Toronto – St. Paul’s) and Official Opposition Health Critic France Gélinas (Nickel Belt) announced the introduction of their co-sponsored Bill, Rare Disease Strategy Act, 2023. This Bill calls on the government to establish a provincial strategy that implements the 19 recommendations put forward by the Rare Diseases Working Group in a 2017 report.

Rare diseases impact nearly 3 million Canadians and are often chronic conditions that can have debilitating impact on people’s lives. Treatments for such conditions can be costly and medication can cost families millions, forcing patients to rely on expensive private drug plans.

If passed, this Bill will help improve access to new and emerging drugs, support enhanced access to existing drugs, early diagnosis and screening for all Ontarians suffering from rare diseases.

“Patients can go through years of seeing specialists before a correct diagnosis is even reached,” said Karpoche. “Because of the delays and barriers people face when navigating rare diseases, their physical and mental health is severely impacted. This is why we are calling on the government to implement a strategy, a strategy that has already been established by the Rare Disease Working Group. Ontarians living with rare diseases deserve comprehensive, integrated, and equitable medical care.”

“Lack of this strategy leaves Ontarians paying the price,” added Andrew. “People with rare diseases like Ehlers Danlos Syndrome (EDS) have had to leave our province because of the lack of care and rely on expensive and private healthcare. Ford Conservatives have systematically defunded our public healthcare system, and left Ontarians without support. Today, we are calling on them to course-correct, and give Ontarians living with rare diseases a fighting chance. Support our rare disease strategy.”

“We knew from a very long time that we had to do better, and the Canadian Organization of Rare Disorders did that, a decade ago,” said Gélinas. “From all ends of the political spectrum, we had consensus that we needed a strategy, we needed an Ontario lens on this issue. We can provide this care and we can improve their lives. We need a government that is willing to put these recommendations into place instead of turning their back on the lives of millions of Ontarians.”

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