Betty Ann Baker can’t recount the waiting room meeting without shedding tears. But it’s not the Welland woman’s own battle against blindness that stirs her emotions.
It’s the woman she met in the waiting room at the eye doctor’s office. An elderly woman who raised 10 kids, but can’t afford a new breakthrough drug seen as the best chance at restoring sight for those who suffer from the most common cause of blindness in Canada — age-related macular degeneration.
The drug, called Lucentis, isn’t covered through OHIP or any other provincial health insurance program in Canada, except in Quebec.
Baker, 57, said she met the elderly woman recently when she was waiting to receive an injection of the drug into her right eye at a cost of nearly $2,000.
Baker said she told the woman about the new drug and urged her to get it. But the woman said she could barely afford the $300 treatment she was waiting to receive with a different drug that promised only to hold her deteriorating sight in check rather than improve it.
“It’s not fair. It’s just not right that our government’s not helping people,” Baker said.
“How do you put a cost on seeing your child’s face? How do you put a cost on seeing your grandchild’s face?”
The Canadian National Institute for the Blind is asking similar questions.
The organization launched a national campaign earlier this week to pressure governments across the country to cover the cost of Lucentis treatments for patients with age-related macular degeneration.
“Canada as one of the wealthiest countries in the world simply needs to include this in its health plan, if for no other reason than it would be economically disastrous if they didn’t,” CNIB president and CEO Jim Sanders said Thursday in a phone interview.
CNIB's President & CEO Jim Sanders was diagnosed with severe glaucoma as an infant and lost his sight entirely when he was 36. Today, at 60, he's helping CNIB enter a new era with renewed energy and focus.CNIB officials maintain vision loss in Canada adds up to $7.9 billion annually in direct and indirect costs, including health-care services and social assistance.
Roughly one million Canadians are affected by age-related macular degeneration.
The most aggressive form of the disease — called wet age-related macular degeneration — moves quickly to knock out the eye’s central vision.
Clinical research has shown that Lucentis allowed nearly half of the patients treated with the wet form of the disease to regain enough vision that they resume driving, said Dr. Keith Gordon, director of research for the CNIB.
“There are other medications out there that stem the decline of vision, but this is the only one that stops it and allows 40 per cent of people to have an improvement in vision,” he said.
But the medication doesn’t come cheaply. Gordon said patients are typically charged approximately $1,600 per injection. Most patients require about nine injections in the first year of treatment, followed by about six shots in the second year, he said.
A course of about 15 treatments over two years adds up to roughly $24,000. “It’s not inexpensive, but on the other side of the ledger are the benefits it provides to Canadians,” Gordon said.
Health Canada gave Novartis Pharmaceuticals Canada Inc. approval last June to begin selling Lucentis. It’s up to provincial and territorial governments individually to decide whether to fund the drug for patients. Ontario’s government is in the process of determining whether to cover Lucentis through OHIP.
The committee of ministry experts conducting a “rapid review” of the drug is finalizing its recommendation presently, ministry spokesman David Jensen said. “It’s definitely in the final stages of the whole process,” he said.
The CNIB launched its “Right to Sight” lobbying campaign just as the national body that makes drug funding recommendations to provincial and territorial governments — called the Common Drug Review — prepares for a review of Lucentis in two weeks.
Care for your parents eyesight. CNIB photoThe panel recommended against governments funding the treatment during a previous review last summer.
Baker said she’s hopeful governments will see economic benefits in paying for the treatment.
“When people lose their independence it costs the government more money,” she said. “You pay now or you pay later.”
Baker, diagnosed with age-related macular degeneration two years ago, said her private health insurance covered about half the cost of the treatment and her employer — non-profit home developer Niagara Peninsula Homes — covered the remainder. She said she has already experienced remarkable improvement after two treatments with Lucentis.
Vision in her one eye with the wet form of the disease has improved by 50 per cent, she said. “I couldn’t believe it. You don’t want to get too hopeful ... but you’re getting your sight back. You’ve got hope,” she said.
By Peter Downs
© 2008 , Osprey Media
