Solène Jouan: Draghi’s plan for Europe to regain its edge in health innovation
On 9 September, former European Central Bank President and Italian Prime Minister Mario Draghi released a report entitled ‘The Future of European Competitiveness‘, requested a year ago by the President of the European Commission, Ursula von der Leyen.
The mandate given to Draghi was to come up with recommendations to make the EU more competitive with the rest of the world (especially the United States and China) in various areas such as defence, energy, transport, space, but also in the pharmaceutical sector.
You might assume this is just another 400-page EU report, destined to join the many others published over the years on various topics — and you wouldn’t be entirely wrong.
However, we should clearly listen and pay attention to the messages this report is conveying, which include the following:
- The EU can achieve this if there is a real commitment from its institutions and from our heads of state and government to make this a reality.
- The EU is no longer as innovative as other regions of the world. There is a clear risk that this trend will continue and worsen if we don’t act now.
- To avoid “a slow agony”, as mentioned by Draghi himself, we should take actions and intensify our efforts to support and bring back innovation in the EU.
Why is this report important for rare diseases?
Rare diseases are not mentioned per se in the report. However, many elements are relevant for our community:
- Indeed, Mario Draghi sees the pharmaceutical sector as very important to Europe’s future competitiveness. But the report highlights that the EU is losing ground to other parts of the world in the areas of orphan medicinal products (OMPs) and advanced therapy medicinal products (ATMPs) — a situation that, according to Draghi, should not be occurring if the EU were given the chance to be more innovative. This is particularly relevant to us as only 6% of all known rare diseases have an approved treatment option, and 69% of rare disease patients have only received symptomatic treatment for their rare condition.
- The report emphasises the need to ensure better access to treatments, a situation that our community is perfectly familiar with due to the inequalities still existing in the EU between the different Member States. The report recommends that cross-country coordination problems are overcome in the area of pricing and reimbursement (P&R) “by assessing the prospect for expanding the scope of EU joint procurement to encompass treatments beyond those in response to cross-border health threats as well as step up cross-country initiatives for joint P&R negotiations for specific medicines.” EURORDIS is actively advocating for these activities in the field of OMPs, as demonstrated by its support for initiatives such as MoCA (the Mechanism of Coordinated Access to Orphan Medicinal Products) and its push for the inclusion of an amendment on joint procurement of centrally authorised OMPs in the ongoing revision of the EU pharmaceutical legislation.
- The report also recommends promoting and streamlining the set-up and management of multi-country trials, strengthening the European Health Data Space (EHDS), and enhancing the use of artificial intelligence in healthcare. These measures present a real opportunity to accelerate the development of orphan medicines and improve the quality of life for people living with rare diseases and their families.
- It is also worth noting that the report places significant emphasis on fostering research within the EU. This includes increasing public R&D investment, promoting academic excellence and world-leading institutions, and designing a simpler, more impactful tenth Research and Innovation Framework Programme, which addresses the shortcomings of Horizon Europe — a programme through which EURORDIS seeks to promote rare disease research at the EU level.
Therefore, this report is not only crucial for revitalising research in the EU, but also has the potential to foster a more innovative and competitive Europe in the field of rare diseases.
However, while the report provides valuable insights, what is truly needed is the political will to implement its recommendations.
What could be the future of this report?
Commissioned by the President of the European Commission, this report is a highly political document. The content of the document is already included in the mandate letters to the nominated Commissioners, which draw the roadmap for their work over the next five years.
However, to implement ALL the recommendations of the report, one key element is needed: money. This is why Draghi has called for common EU borrowing. While this approach found support during the COVID-19 crisis, this proposal would face political obstacles during a period when EU integration and cooperation are less widely embraced.
With support for broader European policies losing momentum across Europe, Mario Draghi’s proposals for deeper European integration may not fully align with the present political climate. Additionally, enthusiasm for resuming joint borrowing has been limited among Member States. While France has strongly advocated for such initiatives in the past, the country’s current political and economic challenges make it difficult to secure the necessary support.
But should we stop there? The answer is, of course, no. Although health may not currently be a top priority in the EU, it is vital to remind all EU and national stakeholders that advancing research—especially on rare diseases—and ensuring better access to healthcare are in our collective interest and crucial to the Union’s future.
We must show that transcending national self-interest and prioritising collaboration benefits everyone. People living with rare diseases and their families deserve this.
By Solène Jouan, EU Public Affairs Manager, EURORDIS-Rare Disease Europe
Disclaimer: As a Staff Blog, the opinions – including possible policy recommendations – expressed in this article are those of the author and do not necessarily represent the views or opinions of EURORDIS. The publication of this article on the EURORDIS website does not equate to endorsement.