Sir George attacks postcode lottery on treatment for blindness
17 Apr 2007
This is the text of a speech Sir George made in the House of Commons about macular degeneration:

Sir George Young (North-West Hampshire) (Con): This debate follows neatly on from the earlier one. I heard the Economic Secretary speak about prevention and early intervention and I hope that those sentiments will inspire the Minister of State, whom I welcome.
I welcome the opportunity for a brief debate on age-related macular degeneration, which causes a progressive and irreversible loss of central vision in older people, and accounts for more than half of all registrations for blindness or partial sight. The Macular Disease Society is based in my constituency and I am grateful to its chief executive, Tom Bremridge, the Royal National Institute of the Blind and Simon Kelly, a consultant ophthalmic surgeon in Bolton, for a briefing for this debate. A number of colleagues share my interest, and I am pleased to see my hon. Friends the Members for Reading, East (Mr. Wilson) and for Weston-super-Mare (John Penrose) in their place. The Macular Disease Society brought to my attention a case from the constituency of the hon. Member for North Norfolk (Norman Lamb), who may catch your eye, Mr. Amess, after I conclude.
There are two types of AMD—dry AMD, which is caused by the slow deterioration of cells on the retina at the back of the eye, which is incurable and untreatable, and wet AMD, which is the most aggressive type. It is caused by the leakage of blood and fluid on to the retina. The macula, which processes detailed central vision, becomes obscured, and a healthy eye can then become blind and useless in three months, unless it is treated. People with AMD, who are usually otherwise healthy people and fully functioning citizens, suffer a diminished quality of life. They become unable to read, drive, recognise friends, tell the time or carry out many other everyday tasks. They run a higher risk of falls, hip fractures and depression, and are, of course, higher users of health care and community-supported services.
In 2004, the RNIB published an estimate of the costs of blindness. It showed that the annual total cost of sight loss was in the region of £4.9 billion. That figure makes it clear that treatments that can halt, or even reverse, sight loss will not only help people who suffer from AMD to avoid the distressing consequences, but will significantly reduce the consequential cost. Thus, rationing treatment to save PCT costs is short-sighted. Allowing any individual to go blind when there is a cure is indefensible. It is also extremely expensive for the taxpayer.
Happily, there are now two new licensed treatments for wet AMD. They stabilise sight loss, prevent blindness and in many cases restore lost vision, as long as diagnosis and treatment are relatively swift. They are Macugen, which was licensed for use last May, and Lucentis, which was licensed in January this year. The treatments have dramatically improved the prospects for sufferers, and the medical and public health professions are understandably lobbying for them to be made more widely available. Less happily, most patients—about 26,000 present themselves with the disease each year—cannot benefit from the new treatments because of the NICE review process, which started in September last year and is not due to complete until October; that is a period of 13 months. Yet in the meantime the drugs are in widespread use in the USA, Australia, France and Germany, and Macugen has been licensed for use by a similar process in Scotland, where it has approval. In the case of many other new therapies that NICE examines, an alternative treatment may be available in the meantime, but the new drugs for wet AMD are unique and there is no alternative.
The Department of Health—and I welcome the Minister, although I may say some unkind things about his Department—has said that the NICE review process should not be a barrier to the use of new treatments, but it has in effect opted out and delegated the decision on whether funding should be authorised to the 152 primary care trusts in England. Many are overspent, and do not have the resources to conduct the effective reviews of the treatment that they are obliged to carry out. The RNIB and the Macular Disease Society have told me that many primary care trusts hide behind the absence of NICE guidance and simply refuse treatment point blank. In Oxford, a consultant’s application for permission to treat was referred to the PCT’s exceptional circumstances committee, which takes a month. It turned down the application because going blind was not regarded as an exceptional circumstance. Consultants in Bristol have been told not even to apply for funding. Therefore, in effect, there is a blanket ban on using those treatments for patients. Many of my hon. Friends will know that their own PCTs are under enormous financial pressure and unless they have to provide a treatment, many decide not to.
John Penrose (Weston-super-Mare) (Con): I congratulate my right hon. Friend on the way in which he is making his case. I shall strengthen his argument by citing the example of North Somerset primary care trust in my constituency, which effectively runs the system that he is describing. Basically, if something is not mandatory under NICE guidelines, because there is a double deficit situation—both the PCT and the hospital are in deficit—the treatment is simply not available.
Sir George Young: I am grateful to my hon. Friend for reinforcing the case that I am making. I shall move on in a moment to what I think that we should do about that.
At Health questions, the Secretary of State for Health said:
“No patient should be refused Lucentis or Macugen simply because NICE guidance does not yet exist”. —[Official Report, 6 February 2007; Vol. 456, c. 692.]
But that is exactly what is happening. The treatments are not being prescribed because the NICE guidance does not exist.
It is not all bad. Some enlightened PCTs and commissioners of services have authorised the new treatments. If someone lives in Salford they are all right, but if someone lives in Wigan, they are not. Other PCTs have mitigated the cost by authorising the use of the unlicensed treatment Avastin, which is having good results. The Secretary of State has suggested a head-to-head trial between Avastin and Lucentis and I want to press the Minister on the progress of those trials. I understand that Professor Usha Chakravarthy in Belfast and Professor Simon Harding in Liverpool are leading such a trial with funding from the Health Development Agency. If it goes ahead, the trial will provide good evidence that would allow regulators such as NICE to recommend the use of Avastin over Lucentis and save the NHS a considerable amount of money. I am interested to find out today whether it would be possible to refer people who live in PCT areas, such as those of my hon. Friends, to whatever centres the trials take place in, so that they can have the treatment offered under the trials. That would effectively create a way through the current bottleneck and postcode lottery.
The consultant ophthalmic surgeon Michael Lavin from Manchester Royal eye hospital said:
“If all patients with wet AMD in the UK were treated with standard dose Lucentis, costs to the NHS by year two would be approximately £1,008m a year; if Avastin were used the cost would be about £4m a year.”
That sounds a good argument for a trial. Even if one uses the lower current figures for Lucentis, at £782 million there would still be a substantial saving.
Putting to one side for a moment those PCTs that are prescribing Macugen or Lucentis and those that are using Avastin off-licence, for the most part, PCTs are simply saying no to the use of the treatments because they are not under any compulsion from the Department of Health to provide them. For example, Mrs. Beeby has been refused treatment in Southampton. She is already blind in one eye and her consultant said that apart from going to him privately—private treatment varies from £1,000 to £1,750 per injection and up to eight injections may be needed in the first year—the only option was for him to ask her GP to apply for treatment in another area. That does not strike me as a good advertisement for a national health service.
What should the Minister do? Only a tiny minority of people know that smoking causes blindness as well as lung cancer and heart disease. More teenagers said that they would quit smoking if they had early signs of blindness compared with lung or heart disease. Does the Minister think that it is time to warn the public of that risk and perhaps to have the message “smoking causes blindness” on tobacco products as well as the more conventional warnings?
I have already said that there is a role for the Government in the head-to-head trials between Avastin and Lucentis and I want to find out whether there is enough funding available for those trials to take on board the constituents of my hon. Friend the Member for Weston-super-Mare and, indeed, the constituents of other hon. Members who find that they are blocked by the current funding policy of their PCT. I hope that the Minister can assure me that the centres at which the trials are taking place will have enough capacity to deal with those people who I am particularly concerned about.
More should be done now. As I said, 26,000 people a year present themselves with this disease and treatment is available now, so it should be provided now. The Government should tell those PCTs that hide behind the absence of NICE guidance that it is unacceptable not to provide the treatment, and that all applications for treatment by consultants should be processed promptly with a presumption that treatment will be given unless there are clinical reasons for that being inappropriate. Ministers should reaffirm that we have a national health service, not a collection of independent trusts, and that the current postcode lottery for treatment must come to an end.
Wet AMD eyes do not wait for the NICE review, for PCTs, for exceptional circumstances, for committees to convene and come to a decision, for patients to appeal against local decisions, or for lobbying to MPs. Such eyes do their own thing and to leave people to go blind within three months is unacceptable, so I ask the Minister to prescribe some humanity now and to provide the service that I am sure he would want for his mother or father.
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Copyright Sir George Young Bt. 2015