She'll go blind without injections, but St. John's woman has hit cap for provincial coverage

It's a hard reality Krista Stephens says she has to face.

She's going to go blind. 

That's if the provincial government doesn't remove the cap on intravitreal injections, a prescription medication that saves the St. John's resident's eyesight. 

"You have your days where you're okay and don't think about it much, but other days you just cry."

"I'm not ready to go blind," the 40-year-old said quietly, staring down into her lap.

"I am going to go blind. Seniors are going to go blind. People are going to continue to go blind if they don't change something." - Krista Stephens

Stephens has macular edema as a result of her diabetes, which causes swelling in the centre of the retina in one of her eyes.

Her ophthalmologist inserts a needle into her eye and injects a medication that forces that swelling to go down. She already has a loss of vision in the other eye.

But under the province's prescription drug program,  the government pays for nine vials of the medication in a person's lifetime. 

And Stephens is way over nine vials. 

Meg Roberts/CBC

"One of the [insurance] reps contacted me and asked me what I am going to do when I reached the nine. I said, 'What do you mean?' And they said, 'You only get nine.' I said, 'Well what happens after the nine?' They said, 'Nothing.'"

Stephens submitted an appeal to the Newfoundland and Labrador Prescription Drug Program (NLPDP) to let her stay on the medication longer, but it was rejected.

The brand name drug she is taking costs about $1,800 a shot. She tried the generic brand, which costs $100 a vial, but she reacted so poorly she now has to get a shot every two weeks to reduce the damage done by the cheaper brand.

"I am going to go blind. Seniors are going to go blind. People are going to continue to go blind if they don't change something — and it's like nobody cares."

Only province in the country that has cap

Stephens' ophthalmologist, Dr. Chris Jackman, has her enrolled in a compassion program which means the drug company is currently paying for the medication, but Jackman said that could end at any time.

Meg Roberts/CBC

He said more than 100 patients are part of the compassion program because they have all exceeded the cap.

"Literally all of those people would have no coverage," said Jackman. 

"[The company] contacted me a year ago and said we can't put any more people on the compassion program."

Jackman said he has multiple patients who stop coming in for followups because they can't afford the medication. 

"I had a patient once that said, 'I had the choice of eating or having my medication,'" Jackman said. "It's a bit heartbreaking because as a physician you want to be able to help all the patients that come through the door, but unfortunately this is handcuffing us."

Jackman said Newfoundland and Labrador is the only province in the country that has a cap on intravitreal injections. 

Meg Roberts/CBC

Relying on evidence: province

Minister of Health and Community Services John Haggie was not available for an interview, however in a statement sent to CBC News the department said the NLPDP uses "evidence-based decision-making processes when considering the coverage of medications."

The province follows a review completed by the Canadian Expert Drug Advisory Committee that recommends coverage be limited to a certain amount of vials, according to the statement.

However, the department did not respond to questions about when the report was done.

Meg Roberts/CBC

It also said the NLPDP is currently reviewing options to cover the generic drug. 

"It is our responsibility to ensure that we spend our public funds where scientific evidence supports significant health outcomes."

Eyecare professionals say lack of evidence

Although the government says policy is based on scientific evidence, both the Canadian Ophthalmological Society and the Canadian Retina Society disagree.

In a letter to the minister, the Canadian Ophthalmological Society said, "current coverage limits fall short of what is needed to maintain vision for people who require treatment— especially if the disease affects both eyes."

The letter goes on to say that on average, 15 intravitreal injections are needed in the first two years of treatment, and an additional three to four injections per year thereafter. 

"The cap on coverage puts long term vision at risk and poses a significant burden on patients and their families," read the letter, signed by Yvonne Buys, president of the society. 

Jim Dinn, the MHA for St. John's Centre said the government has chosen to ignore the advice of the Canadian Ophthalmological Society and the Canadian Retina Society as well as physicians. 

"The minister seems content to base his decision on the recommendation of the Canadian Expert Drug Advisory Committee — a report that has been criticized as outdated and incomplete and insufficient to make 'a statement regarding policy making.'"

"Intravitreal injections are expensive, but the burden on Ms. Stevens, our health care system, and our public funds will be enormous if she loses her eyesight and is unable to live independently," said Dinn. 

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