Some Manitoba cystic fibrosis patients get deferral on Pharmacare deductible, question why others didn't

A select number of Manitobans who were told they must start paying deductibles under the provincial drug program on April 1 have been given a six-month deferral — but only if they suffer from cystic fibrosis.

Devin Rey says he received an email on Monday notifying him of the deferral.

"It is good news for me, personally, but I've been fighting with the government for so long on this matter," said Rey, 24, who was diagnosed with cystic fibrosis shortly after birth.

"I haven't been fighting just for people with cystic fibrosis. I've made it very clear that there are many other people affected by this decision."

There are about 1,100 Manitobans enrolled in the Special Drug Program, or SDP, formerly called the Life-Saving Drug Program.

The program began in 1968 to help those with medical conditions associated with high drug costs, and who had their prescriptions paid for entirely by the province.

When the province's current drug program, Pharmacare, was introduced in 1996, those people were "grandfathered in" and continued to benefit from the exemption, while other Manitobans began paying a deductible based on their household income.

I want to be happy, but I don't think I can be, because I feel like I'm leaving all these people behind.- Devin Rey

Those 1,100 people were told in February they would have to start paying the Pharmacare deductible, beginning April 1.

"Essentially the time has come where we really need to ensure that there is one single program in place where there is equity," Patricia Caetano, executive director of Manitoba Health's provincial drug program, told CBC in February.

However, 51 cystic fibrosis patients on the program will now have six months to come up with their deductible.

Rey can't understand why only those with cystic fibrosis were given more time. 

"When I called [the province] they're like, 'No, we did this for you, you should be happy now,'" said Rey. "I want to be happy, but I don't think I can be, because I feel like I'm leaving all these people behind."

A spokesperson for provincial Health Minister Kelvin Goertzen reiterated Caetano's February statement, saying the issue was about ensuring equal access to Pharmacare.

"For those cystic fibrosis patients currently using the Special Drug Program, additional flexibility to the transition to Pharmacare was added due to the specific concerns they expressed on ensuring prescriptions were obtained prior to the transition," the spokesperson said.

Large deductible

While Rey and other cystic fibrosis patients now have an extra six months to make financial arrangements, they still have to pay the full yearly deductible, he said.

For Rey, that will amount to about $800 yearly. For others, it will be much more.

"One gentleman I know personally who also has cystic fibrosis, his deductible will be $12,000."

That deductible does not cover things like the numerous multivitamins Rey takes, or the concentrated oxygen others need, he added.

Cystic fibrosis is a genetic condition that affects the lungs and the digestive system and requires lifelong treatment.

"They argue, 'Well, the other patients do it, so why can't you?' It doesn't mean it's still not easy, it still doesn't mean it's not hard to get by," said Rey.

One gentleman I know personally who also has cystic fibrosis, his deductible will be $12,000.- Devin Rey

​He also criticized the province for its communication on the change for cystic fibrosis patients.

He received the email from an affected friend on Monday, he said, and the email instructed cystic fibrosis patients on the program to reach out to each other because the province didn't have a comprehensive list.

When Rey called Pharmacare to tell them about his situation, which the email instructed him to do, the Pharmacare staffer had no idea about the changes, he said.

"I called and spoke with Patricia Caetano. She couldn't provide me any information, because she said she had to wait for the health minister's office to give her something."

Rey also tried calling the health minister's office for information but was told his concerns were noted and that he would receive a call or letter back.

"But I have been waiting for over two weeks to hear from his office."