Patients’ groups complained that NICE did not take enough account of the social, as opposed to clinical, benefits of delaying symptoms of Alzheimer’s; that by focusing on clinical cost-benefit analysis alone it ignored the significant benefits to others—both financial and emotional—that would result from delaying the onset of severe dementia, even if only by a little. This highlighted a common tension between the way in which NICE thinks and the way members of the public do. It seems natural to many people to argue for including the benefits to third parties in calculations of cost-effectiveness—but what about patients whom no one cares for? NICE’s approach values the Alzheimer’s sufferer who lives alone and has no friends or relatives just as highly as the one with a large and loving extended family: according to Sir Michael Rawlins, chairman of NICE since its inception, “A QALY is a QALY is a QALY.”

 

Another highly controversial NICE ruling concerned the use of ranibizumab (Lucentis), licensed by the European Medicines Agency in March 2007 to treat wet age-related macular degeneration (wet AMD). This disease, in which blood vessels grow abnormally and leak into the center of the retina, damaging sufferers’ central vision, is one of the most common causes of blindness, with around 26,000 new cases in the United Kingdom a year. The treatment, though, is expensive: around £1,000 for each monthly injection, with as many as 10 or 15 usually needed. And that is just for one eye.

 

NICE’s draft guidance, published in June 2007, was that only the most severely affected fifth of patients should be eligible for treatment on the NHS, and then only for their less-seriously damaged eye. This caused an uproar. NICE received 13,000 complaints on the topic, the most it had ever received on a single issue. And, sure enough, the commotion had an effect. In December it published revised guidance: all patients should be eligible, and for both eyes. It is now considering a proposal by the manufacturer, Genentech, to pay for up to 14 injections per patient, per eye, after which, if further treatment is needed, Genentech will provide the drug for free.

 

What really made this case stand out, though—apart from the way prioritizing the better eye and abandoning the other one highlighted the essential heartlessness of health economics so starkly—was an unusual conflict of interest. Genentech, the company that produces Lucentis, also produces a related drug, bevacizumab (Avastin), licensed in 2004 to treat colorectal cancer. It works by starving certain sorts of tumors of their blood supply, and when it first came on the market, ophthalmologists thought that perhaps it might be able to work on the abnormal growths in the eyes of wet-AMD sufferers. With nothing else to offer patients facing blindness at the time, they took to dividing up single doses of Avastin into as many as 40 parts, and injecting it, off-label, directly into sufferers’ eyes.