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Empower: Access to Medicine campaign raised in House of Lords debate on improving neurology services

Empower: Access to Medicine campaign raised in House of Lords debate on improving neurology services

Baroness Masham of Ilton: My Lords, I thank the noble Baroness, Lady Ford, for asking this important Question. There are an incredible number of neurological conditions, some very rare, all of which are important to the individual. I have a niece who has epilepsy and I know how important continuity of good-quality care is.

I stress the importance of specialist nurses for conditions such as epilepsy, Parkinson's disease, stroke, multiple sclerosis and continence care. The withdrawal of specialist nurses would have a negative impact on services to patients. They are the consultant's right hand. They co-ordinate care and training for other professionals and give support to patients who, without them, could deteriorate and have to be admitted to hospital.

I take this opportunity of bringing to your Lordships' attention the vital needs of people with motor neurone disease. They have to be addressed urgently, as the condition can so often move on very quickly.
Drug development is extremely expensive. It can take more than 10 years and cost more than £1 billion to bring a new drug to market. Will the Government's life sciences strategy, launched in December 2011, help speed up the drug approval process?

No new drug has been developed for motor neurone disease in more than 20 years. MND robs people of the ability to walk, talk, eat normally and ultimately breathe, but they know everything. Some 5,000 people in the United Kingdom have motor neurone disease, and about 1,500 of them die each year-that is about five a day.

A new campaign, founded by Les Halpin, a remarkable person who has motor neurone disease, has been set up to highlight the patient voice in this debate. It is called Empower: Access to Medicine and is focused on accelerating the drug approval process for people with life-threatening illnesses. Les Halpin has the strong support of his constituency MP, Geoffrey Clifton-Brown, and addressed a gathering of parliamentarians in June, when I met him. He has also met the noble Earl, Lord Howe, to discuss the campaign in more detail.

Genetic Alliance UK carried out a survey of patients with rare disease earlier this year and asked them for their views on trying drugs before they are fully approved. One patient replied: "If I was in a plane and offered a parachute with a 90% chance of failing, I would refuse it unless that plane was spiralling out of control towards the ground, in which case I might well be glad of it".
Motor neurone disease-MND-is a rare condition that progressively damages the nervous system, causing the muscles to waste away. A medication called riluzole can extend the lifespan of people with motor neurone disease but it is only moderately effective. Empower: Access to Medicine is a new platform created to open the debate around the lack of drug development for patients with rare or life-threatening conditions. The discussion is not focused on one particular illness but is interested in any life-threatening illness which has a lack of drug development across the whole of the patient body. Given how long it takes to find the right combination of drugs to treat life-threatening conditions, Empower: Access to Medicine is keen to harness this collaboration to ensure that patients and doctors across the world share their experiences in an effort to improve knowledge and accelerate the timescale within which new drugs are developed and approved.

Speeding up the development and availability of drugs that treat life-threatening diseases would benefit everybody in society. The current testing and development process is long, cumbersome and expensive. In fact, a recent report by the Office of Health Economics found that it takes five years on average after launch for a new drug to win NICE approval. This timescale can be more than doubled when added to the time taken for a new drug to go from the development stage through to Phase 3 and beyond. As an example, no new drug has been approved for motor neurone disease since riluzole was approved 20 years ago.
The Empower: Access to Medicine campaign is a unique one, created for patients by patients. It is a powerful voice, rarely heard, but one that I believe could have a real impact on how pharmaceutical companies, regulators, politicians and the general public view drug development.

As the director of the Oxford Centre for Accelerating Medical Innovations said: "I am delighted to be involved in this campaign. Opening up the discussion around the lack of availability of effective drugs for rare and life threatening diseases is a vital first step on the path towards accelerating new innovative drugs".

One of the key problems we are facing today in overcoming the lack of drugs for rare or orphan diseases is the challenge for industry in achieving a return on investment. Major drug companies have been cutting back on their research budgets because the R&D process has hit a wall of cost, time and failure rate. It is a staggering figure worth repeating: to bring a new drug to the market can cost up to £1 billion. Seriously ill patients are quite understandably more willing to try different combinations or new drugs. Because these drugs may improve their quality of life or even stop the progress of their disease, they are willing to accept the risk of possible side effects. We need to involve them more fully in the decision-making. This is a societal issue and all stakeholders must work together. We must be willing to rethink regulation, especially for rare and life-threatening diseases. The European Medicines Agency has an objective to pilot a new approach along these lines which goes under different names-for example, "adaptive licensing" and "progressive authorisation". We must find ways for patients to access drugs more quickly.

I end by saying that there is currently no national guidance for MND. This is a huge gap. MND is rare, complex and progresses rapidly, so health professionals need clear guidance on how to care for people with this disease. Will the Minister please help to expedite the National Institute for Health and Clinical Excellence -NICE-to produce guidance and quality standards for MND? Both have been referred to NICE for development but the timescale for the guidance to start has not yet been determined. How long have they got to wait?

To watch the debate in full, click here.

For the full minutes of the debate, click here.


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