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Ontario Access to CF Drugs Now Tweet Storm

The Government of Ontario screens newborns for cystic fibrosis, recognizing the heavy burden of cystic fibrosis and the need to start treatment as early as possible to slow progression of the disease. Moreover, Ontario was the first jurisdiction to fund Trikafta for eligible people aged six and up – and the province covers the full cost of some symptom management drugs tough the Special Drug Program.  

Still, despite the government’s commitment to these programs for early and broad intervention, it continues to deny access to some Ontarians who need  CFTR modulators. These people simply cannot afford the drugs through public and/or private drug plans, and some private plans refuse to cover them altogether. The pathways to access are expensive, redundant and broken. 

Individuals without private insurance, or whose private insurance won't cover Trikafta can apply for the Ontario Trillium Drug Program (TDP), for a fee of 4% of after-tax household income. Some individuals simply can’t apply because the program is too costly. Others must pay two deductibles: one to their private insurer for coverage of certain medicines, dental, and para-medical services, the other to TDP to access a modulator. The cost of paying two deductibles may be thousands of dollars a year, depending on household income. 

An additional layer of complexity for those trying to access Trikafta and other CFTR modulators in Ontario is OHIP+. This is a program that provides free access to over 5000 drugs for those 24 years of age or younger who do not have private insurance. This includes access to modulators. However, children and youth whose families have private insurance cannot access this program, even if their private insurer refuses to cover life-saving and life-changing therapies. This has created a situation in which some parents have to remove their children from their private drug plans in order to qualify for OHIP+ coverage to get access life-changing CFTR modulators, leaving these children and youth without dental and para-medical coverage, as well as the other benefits that having private insurance may offer.   

Many other Canadian jurisdictions fully fund these drugs through specialized drug programs, with no co-pays or deductibles. Among the Canadian jurisdictions that do require people to pay deductibles for public drug plans, Ontario is the second highest in the country. 

Ontario needs a new way for people with rare disease to access exceptional drugs like Trikafta and to reduce the financial burden on Ontarians by coordinating better with private insurers and drug manufacturers. Cystic Fibrosis Canada is calling on the Government of Ontario to:  

 Join our Tweet storm to raise awareness of these issues and apply pressure on decision makers to act now.