Blindness through wet AMD compared to living with cancer or HIV

25 October 2006

1,000 people a year in Wales are losing their sight due to wet AMD according to RNIB Cymru¹ and AMD Alliance UK². Wet AMD is a very aggressive eye condition that quickly leads to the loss of most useful vision, sometimes in as little as three months.

A recent literature review commissioned by the AMD Alliance International confirms that AMD has a massively damaging effect on people’s lives with the impact being compared to that of living with cancer or HIV³.

The study found that for individuals with AMD, even the most basic daily tasks can become unmanageable leading to a loss of independence. People with AMD were shown to have approximately a third of the ability to perform everyday ‘nearby’ activities, such as reading a newspaper, cooking and reading street signs, compared with people with normal visual function.

Patients with wet AMD are twice as likely to fall as patients with normal vision, more than doubling the risk of fractures and almost doubling the need for medical assistance.

People with wet AMD often become more dependent on others. The study found a loss of independence contributes to the development of clinical depression. On average, patients with wet AMD were almost twice as likely to experience depression as people with normal vision. Canadian research has showed that for people with severe sight loss in both eyes due to AMD, quality of life was affected as much as for those who had a stroke, severe cardiovascular disease, coronary artery disease and cancer. This research also showed that those already “legally” blind would be willing to trade off 60% of their remaining life to regain vision.

Lynda (65) from Newport was diagnosed with wet AMD 9 years ago and is now partially sighted.  Lynda said: “I remember when I was first diagnosed the first thing I felt was panic as I thought I’d have to leave work.  Luckily a friend of mine told me about the help that was available and I continued to work until retirement.  The things I really miss now are reading and navigating.  I also find the fact that I can’t recognise faces quite isolating, particularly when at large social events. I don’t think you ever adjust to the losses.  I feel really lucky because I’m quite a positive person and have the confidence to overcome a lot of the barriers that are caused by my sight loss.”
 
Funding for new treatments

RNIB Cymru is concerned that health bodies are refusing to fund a new treatment that could save the sight of patients with wet AMD.

Local Health Boards (LHBs) are responsible for funding anti-VEGF drugs. These are the only treatments that treat all types of wet age-related macular degeneration (AMD). Currently, only one anti-VEGF drug is licensed in the UK – Macugen, which became available in May 2006.

Ruth Marks, Director of RNIB Cymru, said, “We suspect that LHBs are not funding the licensed treatment, even though it could save patients’ sight.”

The situation is leaving patients with the bleak prospect of either paying for private treatment (at costs ranging from £10,700 to £25,000 for a year’s treatment6) or going blind.

RNIB Cymru is calling on LHBs to expand their services and provide speedy access to anti-VEGF treatments now.

Ruth Marks continued: “Health officials should consider that they can save money by funding these treatments. The cost to the state of supporting someone with sight loss far outweighs the cost of treatment.

“We have a real chance now to turn wet AMD, which devastates so many lives, into a largely treatable condition. But only if it is detected and treated promptly.”