Belgian Deputy PM says a European Action Plan on Rare Diseases is ‘essential’

5 months ago 24

By Euractiv’s Health Hub

Belgium is supporting the creation of a European action plan for rare diseases and is joining other EU member states adopting a national plan, Belgium’s Deputy Prime Minister and Minister of Health and Social Affairs, Frank Vandenbroucke, said.

Vandenbroucke spoke at the Rare Diseases Forum in Brussels, which called for a European plan similar to ‘Europe’s Beating Cancer Plan’.

With data showing the EU lagging behind the US and China in research and innovation expenditure, venture capital investment, and the number of clinical trials taking place in Europe, speakers raised concern about Europe’s ability to compete.

There are obvious benefits of scale by taking a more ambitious European-level approach. Rare diseases impact fewer than five in every 10,000 people. Cumulatively, there are more than 30 million people across Europe living with a rare disease.

The European Parliament also enthusiastically supports more European action to tackle the problem. Last week it adopted an amendment to the pharmaceutical package calling for a dedicated framework for rare diseases to bridge legislation, policies and programmes, with a view to better meeting the needs of people living with rare diseases.

Yann Le Cam, the outgoing chief executive officer at Rare Diseases Europe (EURORDIS), said Europe needs competitiveness, attractiveness, and a strong ecosystem: “What matters is size, volume and investment.”

“We need to develop our efforts financially and we need strong coordination,” said Le Cam. “We need to exploit synergies between research and healthcare with a strategy on data that is empowering that collaboration.”

Fifth Freedom

In Enrico Letta’s final report on the “future of the EU’s single market”, obtained by Euractiv and expected to be presented to EU leaders on Thursday morning, healthcare is identified as a sector that “stands out prominently”. The report states that European healthcare urgently requires significant revitalization and improved resilience.

Letta is calling for a ‘fifth freedom’ in addition to the EU’s four freedoms (people, goods, services and capital) to embed research and innovation as drivers of the single market.

A central pillar of his proposal is the creation of a European Knowledge Commons – a digital platform pooling publicly funded research, data sets and educational resources. Letta argues that bold new goals will mobilise political will, innovation and strategic investment.

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News from the capitals

ATHENS
Greek Prime Minister, Kyriakos Mitsotakis, says he wants Greece to attract more investment from global pharmaceutical companies, to foster life science innovation, while promoting discussions related to European competitiveness. Read more.

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STOCKHOLM
Sweden aims to keep current data protection period in EU pharma package. The Swedish government is opposed to shortening the regulatory data protection period (RDP) for new medicines, as currently proposed by the EU Commission in its pharma legislative overhaul. Swedish key stakeholders are demanding a stronger focus on patients and healthcare. Read more.

Sweden’s NATO membership a challenge for Swedes’ struggling health system.
NATO’s Secretary-General, Jens Stoltenberg, says Sweden needs to increase its health capacity to respond to a crisis or war. As NATO-focused plans are prepared, cutbacks and a lack of healthcare staff could limit national preparedness. Read more.

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PRAGUE
Czechia lacks a vaccination strategy, pharma package could bring focus says MP. Czechia has no clearly defined vaccination strategy, but a new impetus for change could come from the new EU pharmaceutical package, Czech MP tells Euractiv. Read more.

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DUBLIN
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BRUSSELS
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WARSAW
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On the agenda

24 April: Belgian Presidency launch of the Critical Medicines Alliance.

22 – 25 April, European Parliament plenary: Final votes on the so-called “SoHO” – substances of human origin regulation and the European Health Data Space and the revision to the Ambient Air Quality Directives.

21–27 April: The WHO European Region celebrates European Immunization Week (EIW) to promote awareness of the importance of immunization in preventing diseases and protecting life. This year marks the 50th anniversary of the Expanded Programme on Immunization (EPI). Over five decades EPI has protected millions of people from serious vaccine-preventable illnesses.

[Edited by Zoran Radosavljevic]