N.L. lifts dose caps on 2 drugs used to treat retinal diseases

The provincial government announced Thursday that it is immediately lifting the maximum dose caps for two drugs used in the treatment of retinal diseases under the Newfoundland and Labrador Prescription Drug Program.

For Krista Stephens, that means she'll be able to keep her eyesight.

"To be able to wake up everyday and know I'm not going to go blind tomorrow, or six months from now, and hopefully I'll never have to worry about it again, it's such a relief," she said.

Stephens needs one of those drugs, Lucentis, to treat her macular edema. The drug is injected into one of her eyes by her ophthalmologist, reducing swelling in the centre of the retina.

"The more swelling there is, the more your vision distorts, and then the longer the swelling stays there, the more permanent damage is done," she said.

Until the recent changes, the province's prescription drug program would only cover nine injections of Lucentis in a person's life. (Eylea is the other intravitreal drug that had its cap lifted Thursday.) Stevens has long since surpassed those nine, with each additional shot costing $1,800, she said.

Stephens's ophthalmologist, Dr. Chris Jackman, enrolled her in a compassion program, which means the drug company would pay for the medication. Stephens said Lucentis has controlled the swelling and improved her vision.

But now, she won't need to rely on the drug company any longer.

She said she's relieved, but after lobbying the government for changes, she didn't expect changes so quickly.

"It doesn't feel real. I was not expecting this any time soon; we were already in the process of setting up more things to do after Christmas to bring more attention to it," Stephens said.

"I was so shocked, but happy, really happy."

Stephens also credited NDP MHA Jim Dinn for his efforts in helping change the caps in the province's drug program.

Dinn says he's ecstatic that the caps have been lifted and that those who are over the caps and still need the drugs will have some peace of mind.

He said a lot of work was done on the issue before he was elected, but he worked closely with Haggie and the CNIB to make the change.

"I've got to give the minister credit where credit is due in that he saw the benefit in this as well, not only to people like Krista, but also to other people that have these medical issues,"

"Kudos to the government and to people like Krista who stuck with it and continue to advocate for themselves and for others who are in that position."

Health minister weighs in

Health Minister John Haggie said some drug coverage issues are often out of his hands.

"I've had this discussion with various people across the province who fall into private drug plans and they seem to think that I have some influence over those, and quite frankly I don't have any at all," he said.

He said he encourages Krista Stephens to reach out to federal leadership.

"This is as much a federal decision as it's going to be a provincial decision. We've done what we can within the province," said Haggie.

"We've listened to advocates and listened to the members of the third party who were vocal about this and we have done what we think fulfilled our obligations to those people for whom there is no other option. And we're pleased with that."

He also said that solutions exist for patients in N.L. who are not covered by the provincial drug plan.

"For those people who don't have insurance … assistance is available for expensive drugs, and depending on your income, there may be a co-pay for these and that would obviously depend on the price of the individual drugs," he said.

One plan, called the assurance plan, is designed to help that demographic.

"You simply pay a co-pay. And the idea is that it's capped at a certain level of your income, depending on what your income is."

Advocacy not over

Stephens said her efforts in advocating for better coverage won't end until everyone covered — not just those under the provincial plan.

"No one can pay for these injections out of your own pocket, regardless of what tax bracket you're in," she said.

"There's so many eye diseases you can't cure, you can't stop, and here we are with something that's available, but the government just doesn't want to spend money on it.… It's not fair to cover them for some, but not all."

Newfoundland and Labrador was the only province in the country with a cap on intravitreal injections, according to Dr. Chris Jackman.

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