EYE DRUG DENIED TO NHS PATIENTS

They don't care if you go blind!

In an ideal world the drug industry identifies a disease, develops a cure through research and markets it to a ripple of applause. In the real world things are often a lot messier. But seldom are they quite as confused as they are in age-related macular degeneration, the most common cause of blindness in the UK. A new treatment exists that is eminently affordable, apparently safe and backed by a growing body of evidence that it works. But the drug company that owns the rights in the UK cannot even talk about it, and — for commercial reasons — the US company that originally developed it will not be promoting it. Nor is it being taken up by the NHS. As a result, thousands of people who develop the “wet” form of age-related macular degeneration (AMD) are being denied access to a promising treatment. Yet nobody, really, is behaving improperly. There are no villains in this story, just a lot of patients who may feel that the system is short-changing them.

The problem is real and urgent. Half a million people in the UK suffer from the condition, according to the Macular Disease Society. For most — those with the “dry” form of the disease — there are no treatments and no prospect of any. But for the 10 to 15 per cent who suffer from the “wet” form, which progresses more quickly and damages sight more profoundly, there are hopes.

AMD is caused by damage to the macula, the part of the retina responsible for precise vision. In the wet form, abnormal blood vessels grow behind the macula, leaking fluid and blood and causing rapid damage. Wet AMD is responsible for only 15 per cent of cases but it causes 90 per cent of the blindness. There is one treatment for wet AMD; Visudyne, licensed and approved for use in the NHS by the National Institute for Health and Clinical Excellence (Nice). It is not hugely effective and certainly not a cure, but it can help to slow the disease.

Typically for a new medicine in the NHS, Visudyne was slow to reach any patients at all. And although there are now 50 specialist centres set up to provide the treatment, by last November a survey found that only half of the new patients were getting to the clinics in time to save their sight. Visudyne is marketed by Novartis, which has also bought the UK rights to what appears to be a better treatment, Lucentis, developed in the US by Genentech. Lucentis works in the same way as some of the latest cancer drugs, by preventing the growth of the new blood vessels that cause the problem in wet AMD. Lucentis is not yet licensed in the UK, but even when it is it will be expensive, and Nice approval will be needed before the NHS will agree to pay for it. The same applies to another new treatment, Macugen, which does have a UK licence. On past history, the price of both is likely to prove a major obstacle: Lucentis is expected to cost more than £1,000 a treatment and Macugen 4,000 pounds a year per patient.

So far, so familiar; but there is another dimension to the story. Genentech is also responsible for a colon cancer drug, Avastin, which uses the same mechanism as Lucentis but is far cheaper. A few eye surgeons, first in the US and now here, have been using it to treat wet AMD. The results, they say, are excellent. Shirley Davis, a retired NHS radiographer from Huddersfield, is one of the patients treated with Avastin in the UK. Wet AMD developed in her left eye five years ago and she was told then that nothing could be done. Recently her right eye began to deteriorate, too, and she faced the prospect of going blind. She is being treated privately at the Yorkshire Eye Hospital in Apperley Bridge, West Yorkshire. So far she has had one treatment from a surgeon, Shafiq Rehman, who was delighted with the results.

“I was very impressed,” he says. “Ordinarily, after AMD treatment you don’t see any effects when you look into the eye. But I am seeing real changes, less swelling and bleeding, the normal signs of wet AMD. I’ve treated only a handful of patients but 30 to 40 per cent have shown vision improvements. And so far, based on US experience, Avastin is safe. That’s important, and it works very well.Maybe Lucentis will turn out to be the gold standard but my guess is that Avastin is not far behind.”

Shirley Davis is unsure whether her sight has improved and is less excited than Mr Rehman. “He was jumping up and down,” she says. “It cheered me up. Maybe I was expecting too much, I was hoping for a miracle.” But she is encouraged enough to go back for further treatments and her main complaint is that after a lifetime of work for the NHS, she is having to pay for it privately. “I worked for the NHS and now they won’t treat me,” she says. “That makes me cross.”

Several other eye surgeons are using Avastin, all privately. Michael Lavin, consultant ophthalmologist at Manchester Royal Eye Hospital, calculates that the savings are huge. Avastin, he says, is 150 times cheaper than Lucentis: “Avastin is as effective as Lucentis and at least as safe, with safety data on almost 8,000 Avastin injections into the eye compared with Lucentis data on less than 800. It is highly effective, prevents blindness and is much cheaper and more effective than existing NHS treatment.” Richard Gregson, consultant ophthalmologist at Queen’s Medical Centre in Nottingham, agrees that it is just as good as Lucentis. “But it is never going to be licensed for use in the eye, because that would need expensive clinical trials. It wouldn’t be in Genentech’s interest to conduct such trials and nobody else will do it,” he says.

“The NHS used to conduct trials but it’s impossible now. The NHS has almost abolished clinical research of this kind by bureaucratic obstacles and lack of funding. It has always been backward-looking, having to be dragged kicking and screaming to introduce new treatments. There’s a culture of ‘don’t do it’.”

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Medical training funds spent on bureaucracy

Medical schools have accused the states of diverting money meant to fund clinical training of medical students into general hospital coffers. They want the commonwealth to hand control of training funds to universities, warning that inadequate clinical training could threaten the standards of Australian medicine. But the Australian Medical Association has accused universities of siphoning training money into their general administration.

The accusations come amid intensifying concern that public hospitals are not equipped to provide clinical training to the growing number of students of medicine and other health professions such as nursing. The Australian revealed yesterday that Education Minister Julie Bishop was reviewing funding mechanisms in response to complaints that students in allied health professions were being denied clinical training. This followed news that up to 200 physiotherapists might be unable to graduate from universities this year because, while meeting academic requirements, they will not have had adequate hands-on training.

Committee of Deans of Australian Medical Schools chairman Lindon Wing told The Weekend Australian yesterday that public hospitals were under such funding pressure that they were using money previously set aside for training to boost resources for medical treatment. "They are not able to allocate the funds as they might have before," Professor Wing said. "Education is not their focus." Professor Wing said people assumed hospitals had to spend a certain percentage of their funding on clinical training. In fact, hospital budgets had no line item for training.

He said resources were limited and that the situation would worsen because university medical graduate numbers were expected to increase to about 3000 a year in coming years - up from 1250 in 1998. He said CDAMS wanted the federal Government to increase the per-student grant paid to universities for medicine - now about $16,000 a year - or to boost the loading that augmented funding for medical students' clinical training.

However, AMA federal vice-president Choong-Siew Yong said some universities diverted up to half of commonwealth medical student grants into general administration. "The universities must stop using medicine as a cash cow," he said. Federal Health Minister Tony Abbott would not comment.

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For greatest efficiency, lowest cost and maximum choice, ALL hospitals and health insurance schemes should be privately owned and run -- with government-paid vouchers for the very poor and minimal regulation. Both Australia and Sweden have large private sector health systems with government reimbursement for privately-provided services so can a purely private system with some level of government reimbursement or insurance for the poor be so hard to do?

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