Letter from Stephen Rose, Ph.D., Chief Research Officer: The Foundation Fighting Blindness
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Sent via email July 11, 2007
Mr. Andrew Dillon, CEO
National Institute for Health and Clinical Excellence
MidCity Place
71 High Holborn
London WC1V 6NA
Dear Mr. Dillon:
I am the chief research officer for the Foundation Fighting Blindness, a nonprofit organization with a 36-year history of funding international research that will put an end to blinding retinal degenerative diseases, including age-related macular degeneration. I collaborate frequently and closely with the world’s top retinal investigators and clinicians to support the research that will provide affected individuals with preventions, treatments, and cures.
I am writing to express my deep concern about NICE’s recent preliminary guidance on treatments for the wet form of age-related macular degeneration (AMD).
As the leading cause of blindness in people over 55 in Britain and the developed world, AMD is a serious health and quality of life issue that must be addressed aggressively and with all available resources. To limit or deny the use of any approved treatment that has been demonstrated to be safe and efficacious makes no sense economically or morally.
Also, your recommendation that ranibizumab (Lucentis™) only be used once a person has lost vision in one eye is unreasonable and imprudent; this guidance compromises the vision, independence, and overall quality of life for thousands of people in the United Kingdom.
First, a person’s quality of life is diminished significantly once they lose vision in one eye, and even more so if that person is elderly and has other physical and navigational limitations. It is completely unacceptable to allow a person to lose vision in even one eye when a safe and effective treatment is available. I am incredulous that your organization will not support treatment to prevent this loss of vision.
Second, a person’s risk of becoming completely blind increases substantially once they lose vision in one eye from AMD. Studies show that 50 percent of people with wet AMD in one eye will develop wet AMD in their other eye. And even though a person’s second eye can be treated, there is still significant risk that they will lose some or substantial vision in their second eye. By not treating a person’s first eye affected by wet AMD, you are inevitably increasing the likelihood that they will lose vision completely. Again, I am shocked that your organization would expose people to this kind of risk.
Not only does blindness in one or both eyes greatly impact a person’s quality of life, the vision loss and related health care and accommodation costs are a significant economic burden on society; treating both eyes is good for the individual and society as a whole.
As a chief research officer for an organization committed to preventing vision loss and a former U.S. National Institutes of Health employee involved in science and medical policy, I urge you to reconsider the ramifications of your guidance on approved AMD treatments. The vision of many thousands of British citizens is at stake.
Sincerely,
Stephen Rose, Ph.D.
Chief Research Officer
The Foundation Fighting Blindness
