Campaigns

Campaign news - AMD treatments

Summary: Timeline of developments on campaign for access to anti-VEGF treatments.

Barriers to treatment start to come down - April 2008

The long awaited Final Appraisal Document (FAD) on anti-VEGF drugs was published on 2 April 2008. The changes mean that all patients in England and Wales with wet age-related macular degeneration (AMD) could soon get sight-saving drug Lucentis on the NHS.

This final guidance has been improved significantly and once implemented will mean that even patients with significant sight loss (up to visual acuity of 9/96) will be able to receive treatment.

Steve Winyard, Head of Campaigns said: "Today we move a step closer to achieving justice for 19,000 patients in England and Wales who develop wet AMD each year. Countless patients have either been robbed of their sight, or stripped of their life savings to pay for treatment. Today marks a crucial turning point in the way patients with wet AMD will be treated".

77 year-old Colin Valder has wet AMD in his right eye and the untreatable dry AMD in his second eye. Colin, who is being denied treatment by Brighton and Hove City PCT that could stop him from going blind, says: "This is great news for thousands of patients like me who are fighting a long and hard battle to get sight saving treatment on the NHS. It is criminal that people are being left to go blind, despite the billions that have been pumped into the health service. Treatments are available, but only a handful of PCTs are giving them to patients. It makes me extremely angry to think that people are being penalised because of their postcode. Time is running out to save my sight and I hope the PCT changes its policy before it's too late.” If Brighton and Hove City PCT adopts NICE’s proposals, Colin will automatically receive treatment.

NICE is expected to issue final guidance in June 2008. This will make a final ruling on the funding of anti-VEGF treatment and will state how long PCTs and Local Health Boards will be given to fully implement their guidance.

The new recommendations from NICE are very welcome and shows that all the effort put into campaigning on this issue over the last two years has been worth it. This could not have been achieved without your help.

11,000 people write to Andrew Dillon - January 2008

Over 11,000 people responded to our mailing welcoming the second Appraisal Consultation Document and calling for rapid implementation. These letters have been delivered to Andrew Dillon, Chief Executive of Nice.

RNIB's response to the second ACD has also been submitted. This welcomes NICE's decision to fundamentally re-think its position and offer treatment to the vast majority of patients with wet AMD. There are a couple of areas where we would like to see further improvements but we hope that the gist of the recommendations will survive in the final appraisal determination.

We expect the final appraisal document to be published in late March or Early April 2008.

Activities in 2007

Nice delivers early Christmas present to thousands at risk of going blind - December 2007

On 14 December 2007, NICE issued revised draft Guidance, throwing a lifeline to thousands of people who are at risk of going blind from wet AMD. This new Guidance proposes that the anti-VEGF treatment Lucentis should be made available to treat the majority of patients with wet AMD, whether it is the first or second eye that is affected. These new recommendations mean that thousands could soon have their sight saved.

Prolonged wait for NICE decision - November 2007

The NICE Appraisal Committee met on 14 November to decide whether to issue a new Appraisal Consultation Document (ACD) or go straight to a Final Appraisal Determination (FAD) regarding the anti-VEGF treatments that it is currently appraising. If a decision is taken to go straight to FAD, then this is likely to be issued towards the end of December. If another ACD is issued this will be followed by four weeks of consultation, another meeting by the Appraisal Committee and then the Final Appraisal Determination (probably sometime in March 2008 at the earliest).

RNIB calls for a new Appraisal Consultation Document - October 2007

Following the overwhelmingly negative response to the initial Appraisal Consultation Document NICE issued an additional set of documents for consultation. These contained a large number of new scenarios for calculating the cost-effectiveness of the anti-VEGF treatments without providing any indication as to how NICE might decide to change its initial recommendations. As a result the Macular Disease Society, RNIB and the Royal College of Ophthalmologists called on NICE to issue another Appraisal Consultation Document rather than going directly to a Final Appraisal Determination. In addition, RNIB and the Macular Disease Society submitted a detailed joint response to the additional consultation documents on 25 October 2007.

RNIB accuses NICE of incompetence, risking blindness for 10,000 people - August 07

8 August: Following the unprecedented public response to the consultation, NICE has announced that it will not issue guidance on sight-saving drugs this Autumn as expected. It will instead spend months considering its position before issuing a second set of preliminary guidance for consultation. This action means that final guidance will now be delayed until 2008. Press release - 08/08/07

NICE response - July 07

12 July: A record-breaking number of responses have been received by NICE to their preliminary Guidance. We estimate that 20,000 people have expressed their horror at NICE's proposals to deny people sight saving treatment. This is an overwhelming surge of public opinion that NICE simply cannot ignore.

Presentation of seven boxes of responses to NICE

Presentation of seven boxes of responses to NICE

On the final day for consultation, a global alliance of organisations led by RNIB hand delivered responses to NICE.

Oxfordshire PCT announces funding of sight-saving treatment - July 07

18 July: Oxfordshire Primary Care Trust have reversed their decision. From 1 August, patients with wet AMD will be allowed to have Lucentis to combat their condition. However, Oxfordshire PCT are using criteria which means that that only patients who have already gone blind in one eye will qualify for treatment if they go on to develop wet AMD in the other eye. RNIB's response to PCT decision.

NICE receive over 20,000 responses - July 07

12 July: Over 20,000 individuals and organisations sent responses to NICE expressing their concerns over the draft Guidance. On the final day of consultation, a global alliance led by RNIB personally delivered over 10,000 letters to Andrew Dillon at NICE.

RNIB support legal action against PCT - July 07

9 July: RNIB is supporting 84-year-old Henley pensioner Denis Devier, who suffers from the sight-threatening condition wet AMD in taking action against Oxfordshire Primary Care Trust (PCT).

Dennis is blind in one eye and faces losing sight in the other. However, Oxfordshire PCT has rejected his three appeals to get the drugs he needs on the NHS. Instead he has been forced to spend £8000 of the couple's live savings on four courses of treatment with the drug Lucentis.

The trust claims to have a policy that considers funding treatment for "exceptional cases" on a case-by-case basis, yet has not funded a single course of anti-VEGF drugs which treat wet AMD. This is despite more than 70 patients in their care needing treatment. Dennis has been told that for him to be eligible for treatment he must be an exceptional case. In RNIB's view he is.

Lucentis was licensed for use on the NHS to treat wet AMD and should remain available until it and similar drugs have been appraised by NICE. RNIB know that PCTs across England and Wales were denying treatment to thousands of patients who were forced to either find the money to pay for the drugs privately, or go blind. We would support further legal action against any PCT we believe to be acting illegally. Full press release - 09/07/07

NICE preliminary update - June 07

On 14 June 2007, NICE issued their preliminary guidance on the use of anti-VEGF treatments. These findings will condemn 20,000 people in the UK to go blind. We need your help to change NICE's final decision

Lucentis update - June 07

RNIB Scotland has welcomes the decision on 11 June by the Scottish Medicines Consortium (SMC) that the drug Lucentis may be used in the treatment of the wet variety of age-related macular degeneration (AMD). John Legg, Director of RNIB Scotland, said: "It is encouraging to know that with the SMC’s approval of Lucentis there is an additional treatment option available for the 2000 people diagnosed with this condition annually in Scotland. We are calling on all health boards in Scotland to ensure that this treatment is rapidly available for any patient whose consultant prescribes it." Understanding age-related macular degeneration (AMD).

Access to AMD Treatments - May 2007

To help patients access AMD treatments in the absence of NICE guidance RNIB and the Macular Disease Society have launched an advocacy service called 'Action for AMD Treatment (AAT).

Ex-serviceman refused sight-saving treatment - May 2007

1 May 2007 - An ex-serviceman, who is blind in one eye, cares for a disabled wife and now faces losing the sight in his other eye, has been refused sight-saving treatment because the NHS does not consider him to be an ‘exceptional’ case.

Dennis Devier, 84, from Henley on Thames, Oxfordshire, was diagnosed with wet age-related macular degeneration (AMD) in June 2006. He needs anti-VEGF drugs to save his sight but his PCT says it only considers funding if ‘exceptional circumstances for an individual patient have been demonstrated’. In the case of Mr Devier, it says his case is not considered ‘exceptional’.

Mr Devier says he does not know what he needs to do to become an ‘exceptional’ case.

To save his sight, Mr Devier has been forced to spend more than £8,000 on private treatment, but it is draining his life savings.

Private hospital saves pensioner from going blind following RNIB Campaign -April 2007

24 April 2007, pm - Nuffield Hospital offer to privately fund Mr Howard's treatment of wet age-related macular degeneration (AMD). This followed a day of high profile campaigning by RNIB after his PCT said they would only consider funding his treatment after he had gone blind in on eye.

RNIB welcomes the news but would like to see the PCT change its policy, so that other people in the area who have wet AMD will not be left to go blind in one eye before they can be considered for treatment.

Pensioner told we might save your sight – but only after you go blind in one eye - April 2007

24 April 2007, AM - An ex-serviceman has been told that he will need to go blind in one eye before his PCT will consider treating him, even though the drugs are licensed for use on the NHS.

Leslie Howard, 76, from Acomb, York, was diagnosed with wet age-related macular degeneration (AMD) in his right eye in November. He needs anti-VEGF drugs to save his sight but the PCT says it will only consider funding once he has gone blind in one eye and developed wet AMD in his second eye.

Now Mr Howard’s only hope is to pay for private treatment – wet AMD can cause sight loss in as little as three months and requires prompt treatment. But Mr Howard, who has devoted most of his life to public service, cannot afford private care – he was told it would cost more than £6,000 a year.

NHS sees light and saves couple from choosing who goes blind - March 2007

7 March 2007 - Wiltshire Primary Care Trust announce they will fund Mrs Roberts treatment. The trust denied accusations of a U-turn, but still faced criticism for allowing the couple's condition to deteriorate by taking more than two months to decide.

NHS forces elderly couple to choose which one's sight is saved - March 2007

6 March 2007 - An elderly couple, both recently diagnosed with wet AMD were told they needed treatment with anti-VEGF drugs, but if they wanted treatment quickly, they would have to pay for it privately, even thought the drugs are licensed for use on the NHS.

Pensioners Mr & Mrs Roberts can only afford private treatment for one of them as it costs more than £600 each month for the drugs and treatment is on going. Forced to choose whose sight they should save, the couple decided that Mrs Roberts should have private treatment as her sight is deteriorating faster.

The couple has applied to the PCT for funding, and although prompt treatment is critical, two months on, they have yet to hear whether their treatment will be funded. If the NHS should refuse funding, Mr Roberts faces the prospect of going blind to a treatable condition.

This is just one of many cases where older patients are being forced to use their retirement funds to pay for sight-saving treatment that should be available readily on the NHS. In cases where people can't afford private treatment, patients face the prospect of going blind unnecessarily.

NHS to reconsider eye drug ruling - January 2007

31 January 2007 - The NHS trust that refused to fund the drug Lucentis for treatment of former MP Alice Mahon has announced it will review its decision. The PCT said that news the drug had received its European licence meant it would reconsider the decision.

Former MP challenges the NHS - January 2007

30 January 2007 - RNIB supports former labour MP in her legal campaign against the Health Service.

Recently retired Labour MP Alice Mahon was diagnosed with the condition age-related macular degeneration (AMD) less than two months ago, and was refused the new drug Lucentis by her PCT (Primary Care Trust). In trials Lucentis has been shown to improve vision in a third of patients and halt the deterioration in most of the rest.

While battling her case through an NHS appeal process, Alice's sight deteriorated and she has now lost most of her sight in one eye, and is expected to lose sight in her other eye. Alice has been forced to pay £5,000 for private treatment to stop herself going blind and is now considering to go to the High Court to make the Health Service pay for the drug. Alice said:

"Eyeryone has a right to free treatment on the NHS for a condition that results in blindness and devastates lives. Supporting people who are blind or partially sighted, who may need home help and suffer injuries from falls, is far more expensive than the treatment. The chancellor must ensure the NHS budget is large enough to fund such a basic health care need"

A Private Members Bill tabled by Linda Riordan MP is calling for the NHS to fund the treatment. The Bill has its second reading next month. MPs are also tabling an Early Day Motion today calling for the treatment to be funded.

Lucentis receives European approval - January 2007

On 24 January 2007 Lucentis received approval in the European Union as a new treatment for patients with wet age-related macular degeneration (AMD). The European Commissions decision comes just 11 months after submission and applies to all 27 member states as well as Iceland and Norway.

Activities in 2006

Lucentis - latest research - October 2006

On 5 October 2006 new evidence on the effectiveness of Lucentis in treating wet AMD was published in the New England Journal of Medicine. The study found Lucentis slowed vision loss in around nine out of 10 patients and improved vision in about a third.

The 716 patients who took part in the study were given eye chart tests before and after receiving the drug, or a placebo. Overall, nine out of 10 of those given the drug lost fewer than 15 of the letters on the chart two years after starting treatment. This compared to five out of 10 of the patients given a placebo. What is more 30 per cent experienced an improvement in their sight.

Thousands of people a year in the UK get wet AMD and it rapidly leads to sight loss. Although this drug is not a cure it offers patients a chance of having some of their vision restored.

It is important to know that even patients with a visual acuity as low as 6/90 (well below the threshold for registration as blind) have been shown to benefit from treatment. However, the abnormal blood vessels that have caused the sight loss need to be active for treatment to be successful. In practice this means that patients who lost their sight many years ago and have not had any further deterioration since are unlikely to be eligible.

RNIB calls for UK to follow Scottish guidance - August 2006

On 7 August 2006, guidance was issued by the Scottish Medicines Consortium (SMC) for Macugen to be used in treatment of AMD. This is a major step forward in the battle for licensed treatment options in Scotland but adds to the frustrating delay being experienced by many thousands of patients in other parts of the UK.

RNIB issued a press release welcoming the positive guidance issued by the SMC. Steve Winyard, RNIB Head of Campaigns said "Whilst the SMC's decision is great news for patients in Scotland, it doesn't help people with wet AMD in the rest of the UK". Ophthalmologists throughout the UK have also welcomed the guidance and are urging commissioners to support recommendations for the use of these new treatments.

Full press release September 2006

Further information

Further information about AMD

Back to wet AMD treatments campaign home

Content author: campaign@rnib.org.uk

Last updated: 02/04/2008 15:23

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