Public funds should be available for sight-saving drug

A diabetic man from York with serious sight problems still considers himself very fortunate. That’s because he’s been lucky enough to find someone prepared to pay privately for his treatment for macular oedema. 

Meanwhile NHS patients are being denied the Lucentis injections he benefits from after the National Institute for Health and Clinical Excellence [NICE], responsible for overseeing drug use in the NHS, ruled it was not ‘cost effective’ compared to laser treatment.

And whilst the decision has been open to appeal it’s anticipated that the final announcement, due shortly, will confirm that the UK’s estimated 10,000 affected diabetics will be treated differently to those with age related macular degeneration. Such sufferers will continue to receive Lucentis, which by accounting for 1% of the entire NHS drugs budget last year has led to some Primary Care Trusts seeking to replace with a considerably cheaper unlicensed drug, Avastin.

The macular is the central part of the retina responsible for colour vision and fine detail. A change in retinal blood vessels can create the conditions for excess fluid that can lead to severe visual impairment in the affected eye[s]. 

Stephen Moore is aged 34 and married with one young son, Max. He first began experiencing problems in his right eye eight years ago, two years after being diagnosed with diabetes. In response Stephen began to wear glasses but three years ago when his left eye became similarly affected he sought more specialist help. He had laser treatment on his right eye and then steroid injections in both eyes, all paid for by the NHS.

“In both cases the improvement was minimal” says Moore who faced with worsening eye-sight, and worried about eventually having to give up his occupation in I.T applications, approached the Occupational Health department at his workplace after finding it difficult to see what was on his computer except by sitting right up to the screen.

“They told me about the Access to Work scheme funded by the Government to help disabled people do their job. Which is good, but even with such help I couldn’t have continued to do my current job, which is decently paid and one I enjoy,” says Moore.

Meantime a specialist eye consultant informed Moore about Lucentis, available privately whilst NICE reviewed whether to make it available on the NHS. He claims to have met people who’ve re-mortgaged their homes to fund injections costing over £700 a time. He estimates he’s had 23 so far, doesn’t know how many he may still require and worries that the private funds he currently enjoys could end.

What he does believe is the current treatment is working and he highlights the fact that earlier this year he successfully passed a DVLA test allowing him to continue driving. Which is why Moore is backing the campaign by the Royal National Institute of the Blind to persuade NICE to change its mind.

“My good luck doesn’t mean I am happy seeing other people denied a drug that can massively improve their lives. It’s not cheap but they already provide it to one section of the community. Furthermore denying people the injections might cost the taxpayer a considerable sum because there will be the need to provide longer-term care support for someone who can’t see and function effectively. People like myself who are working won’t be able to do so, and tax revenues will be lost” says Moore.

Stephen Moore 

 A NICE spokesperson said the organisation would shortly announce its final decision.