EU must act on rare plasma disorders

It's time for the EU to take action on rare plasma disorders, writes Paul Rübig.

By Paul Rübig

31 May 2016

In recent years health has become an increasingly important topic within European policymaking, developing from simple product-related legislation to more general, health system-related legislation.

Plasma disorders are life-threatening and have a major impact on everyday life - the most commonly known being haemophilia. European legislation on healthcare issues such as plasma disorders has a dual aim.

Firstly, there is an interest in greater European cooperation in procurement processes involved in haemophilia treatments and the related importance for small and medium sized businesses that specialise in healthcare.


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Secondly, everything is about scientific and technological progress, which plays a crucial role in the development of new generations of diagnostics and treatments and hence improves the health of patients and their ability to live in an independent manner.

As politicians and especially as European decision makers, I truly believe that we have a responsibility for patients in general, including those who suffer from a rare plasma disorder and the diseases that result from it.

To tackle the particular challenges we face in the health sector, we must first strive for new scientific solutions and better cures. Collecting of accurate data on rare plasma disorders can also help generate awareness among stakeholders.

Here in the European Parliament we are witnessing a highly positive development in the growing commitment to raise the quality of science-based evidence throughout the legislative cycle. To ensure this, we have established the European Parliamentary Research Service, which includes a scientific foresight unit, aimed at anticipating trends in different scientific fields. 

As Chair of the Parliament's Science and Technology Options Assessment (STOA) Panel, I am convinced of the need to base legislation on scientific evidence. This way, we can address the global challenges we now face and in the future across the many fields of life science.

STOA provides independent scientific advice for the Parliament by carrying out projects to identify long-term strategic policy options in specific science and technology policy areas. It looks to stimulate debate on techno-scientific issues that are of current political relevance, facilitating the exchange of views between experts, policymakers and the general public. 

Increasingly, health and new technologies in life sciences are becoming one of STOA's main focus areas. Projects have been carried out in the areas of nanomedicine, brain disorders and infectious diseases.

The most valuable contributors when talking about rare plasma disorders are those who donate blood or plasma and by so doing provide relief for patients who depend on such contributions in their daily lives. 

As we work to improve the situation for people with rare plasma disorders, we must include all major stakeholders in the decision-making process. Patient organisations make a vital contribution in increasing general awareness.

In addition, the contribution of businesses active in the health sector in collecting plasma and providing plasma-based therapies, together with the scientific community developing scientific and technological options are essential in treating diseases and vital when it comes to the treatment options available.

A joint approach involving all stakeholders is needed to make sure that European legislation truly makes a difference for those affected by these diseases. I genuinely believe that a fruitful cooperation between the scientific community, the entrepreneurial world, politicians and public administrators benefits innovation as a whole in the area of treatment, care and health technologies. Such cooperation stimulates the transfer and exchange of the knowledge and skills that are so important in generating health sector innovation.

We need to encourage Europe's entrepreneurial potential to close the gap between research and innovation, supporting European industry in developing new products and services.

Rare plasma disorder patients have had a special interest in the EU's institutions and activities. The 2002 blood directive was the first piece of legislation setting minimum standards of quality and safety for blood products. It aimed at harmonising the quality, collection, testing, processing, storage and distribution of blood and blood components. 

Additionally, several EU initiatives were launched with the aim of improving the lives of people affected by rare plasma diseases, such as the patients' rights in cross-border healthcare directive, the rare diseases policies initiated during France's last EU Council presidency and the European Commission's Horizon 2020 research and innovation programme.

I am convinced that we should take a cross policy perspective, looking at all EU initiatives relevant to rare plasma disorders. From this perspective, policies such as the EU's jobs and growth agenda offer a chance to support people with rare plasma disorders. 

Only a healthy society can grow and prosper. Most plasma diseases are treatable, and if patients are diagnosed and properly treated, they can continue contributing to society.

The EU should therefore encourage investment in research and innovation so that Europe can continue to be a leader in innovative diagnostic and therapeutic solutions for plasma disorders.

 

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