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CNIB’s Right to Sight Campaign – Latest Update

April 15, 2009, update – Newfoundland and Labrador, Saskatchewan, British Columbia, and the Yukon have recently added Lucentis to their provincial/territorial formularies – or have announced they will do so shortly. Read CNIB’s news release for more information.

March 28, 2008 – Today the Common Drug Review (CDR) published its final recommendation for Lucentis, and CNIB is pleased to report that the recommendation was positive, overturning CDR’s initial decision.

This is a good step forward for people with wet AMD in Canada. It means CDR is officially recommending that Canada’s provincial and territorial health plans reimburse Lucentis, the first and only treatment clinically proven in many cases to restore vision lost as a result of wet age-related macular degeneration (AMD) – a big change from CDR’s initial negative recommendation.

Canada’s two largest provinces, Ontario and Quebec, are already reimbursing Lucentis. CNIB hopes that as a result of today’s announcement, the remaining provinces and territories will begin reviewing Lucentis, and will include it in their own health plans without delay. There is good precedent for this, as typically provincial and territorial drug plans follow CDR recommendations more than 90% of the time. All Canadians deserve what those in Quebec and Ontario currently enjoy.

Although CDR’s recommendation was positive, it also included suggested restrictions including that Lucentis should not be funded in combination with verteporfin (Visudyne – another wet AMD treatment) and that drug plan coverage should be limited to a maximum of 15 vials per patient used to treat the better seeing affected eye.

CNIB understands the need for criteria to balance the economic impact of including a treatment in government health plans, but will also urge provincial and territorial health ministers to consider coverage of the treatment for people who get wet AMD in both eyes when their sight can be saved.

We will continue to post any further updates that become available on this page. If you would like to be added to our Right to Sight email list, please select one of the links below. We will be sure to let you know if there are other opportunities to help in future.

Join the Right to Sight email list:

• I live in Canada
• I live outside Canada

Thank you once again to all who participated for your tremendous support of the right to sight. Your actions ultimately made a big difference in highlighting the importance of this issue for Canadians. You can be very proud of what you helped to achieve on behalf of all Canadians who have AMD or are at risk of it in future.

Best wishes,
CNIB

About the Right to Sight Campaign

In late 2007, Canada’s Common Drug Review (CDR) a government advisory body that recommends whether drugs should be covered under provincial and territorial health plans, issued a negative recommendation for a treatment called Lucentis. Approved for use in Canada by Health Canada in 2007, Lucentis is the first clinically proven treatment to restore vision for many people who have wet age-related macular degeneration (AMD).

Because CDR was to reconsider its decision and issue a final recommendation on January 23, 2008, CNIB launched the Right to Sight advocacy campaign in an effort to have the initial decision overturned. In the two weeks leading up to January 23, 8,000 letters were sent to government and CDR officials from concerned individuals in every province and territory in Canada, and from all over the world.

In an unprecedented move, CDR decided to take more time to make its decision, and scheduled a meeting for March 19. Meanwhile, on March 13, the Government of Ontario announced it had concluded its own rapid review of Lucentis and would begin reimbursing the treatment, becoming the second Canadian province after Quebec to do so. (Quebec is not part of CDR and had been reimbursing Lucentis since 2007; Ontario ordered its own review of Lucentis in the fall of 2007, recognizing the innovative nature of the treatment.)

On March 28, 2008, CDR’s final decision on Lucentis was made public – a positive recommendations. Since then, Newfoundland and Labrador, Saskatchewan, British Columbia, and the Yukon have recently added Lucentis to their provincial/territorial formularies – or have announced they will do so. It is now up to the remaining provinces and territories to decide whether to follow CDR’s recommendation.

For more information:
CNIB’s April 15, 2009, press release, with updates on Lucentis coverage in Canada.
Lucentis coverage in Ontario, guidelines for patients and physicians.
CNIB’s January 21 press release.
Letter of support from Canadian comedian and actor Mary Walsh, who has wet AMD.
CNIB’s press release congratulating the Government of Ontario
CDR’s drug database. Scroll down to “Ranibizumab,” which is the generic name of Lucentis.
CNIB’s news release about CDR decision
CNIB’s Right to Sight Facebook group.

New hope for fighting blindness

"With Lucentis, many people now have hope of actually regaining some of their lost vision, promising a great increase in their quality of life."
- Dr. Keith Gordon, Head of Research, CNIB

About 100,000 Canadians have the most severe form of AMD (age-related macular degeneration), called ‘wet’ AMD. A new drug called Lucentis can stop wet AMD and even restore sight for many people who receive it. But without government funding, thousands of Canadians won’t be able to afford it. Five provinces and two territories in Canada have yet to make any decision regarding the reimbursement of Lucentis in their health plans.

Want to learn more about AMD? Take the AMD Challenge. Or visit the AMD section on CNIB’s website.

9 Questions and Answers About AMD and Lucentis

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Jaws Instructions
Tab through the bullet links below, and press space to reveal the text below a hyperlink. Use the down arrow to read the paragraphs line by line. Repeat this step when you come across the next bulleted hyperlink.

• • What is wet AMD?
  • Age-related macular degeneration is the leading cause of vision loss in Canadians. In the eye, AMD affects a very small area in the centre of the retina called the macula, which is responsible for the central vision necessary for identifying faces and performing everyday activities such reading and driving.
    
    Wet AMD is the most aggressive form of the disease and causes rapid and severe central vision loss in a matter of weeks to months. It is responsible for 90% of the severe vision loss associated with AMD, and is associated with the growth of blood vessels underneath the macula. These vessels are fragile and leak fluid and blood, which damages the macula.
• • What are the risk factors for AMD?
  • AMD has a number of risk factors. The most significant, proven risk factors are your age, having a family history of the disease and smoking (smokers are up to four times more likely to develop AMD, and up to 144 times more likely if they also have a family history of the disease).
    
    Other risk factors include:
    1. • Female gender (due to a longer life expectancy)
    2. • Poor diet, a sedentary lifestyle and obesity
    3. • Farsightedness
    4. • Early menopause in women
    5. • Light skin and eye colouring
    6. • Past sunlight exposure
    7. • Cataract surgery
    8. • Being of Caucasian race
• • What are the symptoms of wet AMD?
  • Wet AMD symptoms may include:
    1. • Central vision that is blurred or distorted with a growing central blind spot.
    2. • Straight lines appearing wavy, such as the sides of a building appearing crooked, or words on a page appearing to be arranged in wavy lines.
    3. • Signs of central vision loss, for example:
       1. • Difficulty recognizing faces.
       2. • Seeing the outline of a clock but having difficulty seeing the numbers or hands.
       3. • Seeing the outline of a building but no doors or windows.
    4. • A decreased ability to distinguish colours, especially under poor lighting conditions.
    5. • Difficulty adjusting to changes in lighting, such as coming in from outside on a bright day.
• • What causes AMD?
  • The exact cause of AMD is not known. As its name suggests, age-related macular degeneration is a disease linked to age. Specifically, anyone over the age of 50 is more at risk for developing AMD, although it can occur at any age.
• • How many people have AMD compared to other diseases?
  • Age-related macular degeneration (AMD) affects more Canadians than many other well-known diseases. It affects many more people than breast cancer, prostate cancer, Parkinson’s and Alzheimer's disease combined and is the leading cause of vision loss in Canadians. It is estimated that more than one million Canadians have AMD, of which 100,000 currently are affected by wet AMD. AMD should be better known, but public awareness of it really only began in the late 1990s.
• • Why did CNIB run the Right to Sight campaign?
  • CNIB is the primary source of support, information and most importantly, hope, for all Canadians affected by vision loss. We are recognized experts in vision health and have been making a profound difference in the lives of Canadians since 1918. As AMD is the leading cause of vision loss in Canadians and Lucentis is the only clinically proven treatment to stop the progression of the disease and actually restore vision for many wet AMD patients, we launched the campaign to encourage CDR to recommend this breakthrough treatment.
• • Why was Lucentis turned down by CDR the first time?
  • CNIB was unaware of the details of the initial decision (they were not made public), but did know the clinical results of the Lucentis trials and was convinced the drug was highly effective and had the potential to save the Canadian health care system in both direct and indirect costs. This was supported by the fact that Lucentis was approved for use in Canada by Health Canada and approved for coverage under the provincial health plans in Quebec (and later, Ontario). Lucentis is also approved and reimbursed in the United States, Australia, the United Kingdom, Switzerland, France and other countries around the world.
• • Are there other treatments available for wet AMD?
  
  • Health Canada-approved therapies previous to Lucentis only slowed the progression of wet AMD, which is what makes Lucentis so important to the tens of thousands of Canadians who have experienced vision loss from this disease. Until now, vision loss for these patients was irreversible. Lucentis is the first and only clinically proven treatment to actually restore vision for many patients with wet AMD.
    
    Some doctors in Canada are treating wet AMD with Avastin off-label. However, Avastin is designed to treat colorectal cancer, so it is not intended to treat wet AMD, nor has it been extensively clinically tested. Avastin has not been approved by Health Canada for use with wet AMD patients. CNIB cannot condone any treatment that has not gone through rigorous and appropriate clinical trials nor been approved for use in Canada. Lucentis is approved by Health Canada.
• • Isn't Lucentis too expensive to be covered by the government?
  • Lucentis costs approximately $1,600 per injection and CNIB feels this is justified compared to the cost of vision loss in Canada. The cost of vision loss in Canada, much of it driven by AMD, is estimated at $7.9 billion per year in direct and indirect health care costs – on par with diseases such as diabetes. Indirect costs include lower expected earnings for people with vision loss, cost of medical aids and rehabilitation services, cost of caregivers’ time and effort, and loss of taxes from lower earnings. This does not take into consideration the value of a person’s sight or the simple activities that are impossible without it, such as reading, driving or seeing the face of a loved one.