Letter from Dr. Charles Mossop
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Mr. Andrew Dillon, CEO
National Institute for Health and Clinical Excellence
MidCity Place
71 High Holborn
London WC1V 6NA
June 28th 2007
Dear Mr. Dillon:
RE: NICE Guidelines on the treatment of AMD
I write to you from Canada, a country where treatments for AMD are approved and reimbursed under public health care programmes, to express to you my shock and horror at the draft guidelines recently published by your agency relative to the treatment of AMD.
I was astounded to read your recommendations, especially given your acknowledgement that the treatments are effective. I am shocked and appalled at the apparent unconcern your agency shows for seniors facing low vision and blindness.
I am completely unable to understand your recommendation that Macugen should not be used, but I find your recommendation that Lucentis be used only when both eyes are affected and then only in the better-seeing eye, to be outrageous. The benefits of these drugs are well documented, as are the costs, financial, social and psychological, of blindness, and so I cannot help wondering how your agency could possibly make the recommendations it has. They strike me as almost medieval in their disregard for people’s quality of life. Such cold disdain should have disappeared along with trial by ordeal and beliefs in the divine right of kings.
I live with MD, and treatments are unavailable to me because the disease process is too far advanced. Treatments must be commenced as soon as medically feasible, and to wait deliberately until both eyes are affected is as good as condemning many patients to low vision or blindness. It is only a retinal specialist who can decide when treatment should begin; decisions on the scheduling of medical intervention are beyond the purview of your agency as I understand your mandate.
Had treatments been available to me in the early stages of my MD condition, I might well still be able to read normal-sized print, to fill in forms, go shopping without assistance, work safely in a workshop or kitchen and do the myriad other things I can no longer do, but which I once took for granted. Worst of all, however, is that after a lifetime of playing and performing as a classical guitarist, I can no longer read music. I ask you to try and imagine -if you can -the impact that MD has had on my life, and urge you to lift the awful sentence you are proposing to pronounce on hundreds of thousands of people in England, Wales and Northern Ireland. The treatments are there. They work. How can you, in all good conscience, simply refuse to make them available freely and on a timely basis to those who need them? I can only say that such a decision amounts to callous inhumanity.
Your agency is in a position to help older citizens avoid the life-changing impact and mental anguish of low vision and blindness, and I am confident that after due diligence and further reflection, you will see this, and act with the compassion and understanding required. Many other nations will look to Britain for advice and guidance in this. Now is the time to show enlightened leadership.
Thank you for your continued consideration of this most urgent and critical matter.
Yours sincerely,
Dr. Charles Mossop
cmossop@telus.net
