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CASMI Supports Empower Campaign in House of Lords

CASMI Supports Empower Campaign in House of Lords

The issue of slow drug development and lack of approvals for new medicines, particularly in neurology, was recently raised in parliament. CASMI’s support for The Empower: Access to Medicine campaign was announced and we will continue to strive towards creating a more productive environment for new treatments for neglected diseases.

Extract from the House of Lords Parliamentary Debate:

Asked by Baroness Ford - To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.

Baroness Masham of Ilton-  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?”

The full text can be found here:


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