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Under the Microscope: MEP calls out Lack of Research for Rare Diseases

John Procter, MEP for Yorkshire and the Humber is calling for more resources and continued cooperation with the EU to protect and save patients suffering from rare diseases1 in the UK and across Europe. 

Despite EU efforts to tackle this issue, many patients are being left with conditions that remain undiagnosed or untreated due to slow progress with rare disease research and there being a limited number of effective treatments on the market thanks to the high costs involved. The field of rare diseases is still suffering from insufficient medical and scientific knowledge despite the fact that any delay between first symptoms and actual diagnosis impacts seriously on a patient’s life expectancy.

A lethal combination of lack of funding, research and effective treatments means many EU patients are facing a gaping hole in medical care which will potentially put them in an early grave. The previous UK Conservative Government, under David Cameron, took positive steps to make funding available for rare cancers, but Procter, who has recently been doing a lot of work on Idiopathic Pulmonary Fibrosis with the European Commission, wants to see increased awareness and funding of other rare diseases too. 

Procter commented: “The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care through cooperation and the sharing of expertise in advanced therapies. A great working example of this is the European Reference Network, which joins together universities, research institutes and different developers of treatments especially in precision therapies. “

It is clear that no single nation in isolation has the capacity to effectively address the challenges that rare diseases present to the medical profession and therefore, cross-border healthcare initiatives and the eHealth network are perfect examples of where pan-European cooperation, expertise and research is imperative to facilitate a positive outcome for patients.” 

The NHS in the UK is not only one of the largest employers in Europe but a world-class leader in medical treatment. There will be a strong need and desire for the UK to continue to work closely with the EU on medical research for rare diseases after March 29th. The costly nature of the research and medicines involved mean that it will only be with considerable economies of scale that a reliable supply of essential medicine can be achievable for all. The European Commission is working hard to support the universal human right of access to treatment with no discrimination as to whether that patient comes from the Netherlands or Lithuania. 

As it stands, the EU has in the region of 30 million citizens who are suffering from a ‘rare’ disease and this figure includes those in the UK. The Health strand of the European Social Fund and the Horizon Europe framework programme are working in support of this cause but need critical funding. As for UK patients, their life expectancy outcomes could well be dependent upon the continued cooperation between the work of the NHS and the UK Government with the EU.