A spotlight on rare cancers

It’s the European Week Against Cancer (EWAC) and Euractiv is taking the opportunity to highlight the issue of rare cancers in this week’s Health Brief. 

According to the European Society for Medical Oncology (ESMO) there are more than five million patients in Europe who have rare or ultra-rare cancers. There are a massive 650,000 new diagnoses each year. 

Tomorrow, we will publish an interview with Jean-Yves Blay, director of public policy at the European Society for Medical Oncology (ESMO), who is also the coordinator of the European Reference Network on rare adult cancers, EURACAN. 

We’ve asked Blay about everything from prevention to workforce issues. When it comes to the particular challenges of diagnosis and treatment of rare cancers, there are clear benefits from cooperation at the EU level, and Blay stressed as a great example of how we are stronger when we act together.

ESMO recognises the progress made in the current mandate, but notes that the EU Beating Cancer Plan does not have a dedicated action area for rare cancers. 

In its manifesto ahead of the European Parliament elections, ESMO called for rare cancers to be prioritised with specific work streams within the research programme.

The recently adopted European Health Data Space also presents opportunities, but ESMO says there is a need to ensure consistency with the General Data Protection Regulation (GDPR) and Clinical Trials Regulation (CTR). 

The In Vitro Diagnostic Medical Devices Regulation (IVMD) is another area where the interplay with the CTR is triggering unintended consequences and creating delays and barriers to treatments being assessed and reaching patients.

Blay says this has significantly slowed the process and there needs to be consistency between good ideas and the capacity to implement them.

The Pharmaceutical Package, which is still working its way through the legislative process, also presents an opportunity to improve the position of rare cancers.

ESMO welcomed the references to unmet medical needs and high unmet medical needs in the package, adding that any criteria to define these needs should take account of the rapid pace of scientific developments.

However, there was disappointment that amendments referring to improved quality of life were not adopted by the parliament.

Read more in our interview with Jean-Yves Blay tomorrow.

EU joint action on cancer screening

Ahead of EWAC, EU  Health Commissioner Stella Kyriakides said: “In a strong European Health Union, nobody should be left behind regardless of their medical predisposition, prognosis or history.”

Kyriakides said the EU will soon be launching a joint action on the implementation of cancer screening programmes, funded with over €30 million.

The EU will also publish a study on job retention and return to work for cancer patients and those who have had cancer. 

Pandemic Agreement

Despite failing to reach an agreement on a Pandemic Accord ahead of this week’s World Health Assembly, it was agreed to continue work with the aim of finalising amendments to the International Health Regulations and agreeing to the timing, format and process to conclude the pandemic agreement. 

Melinda French Gates Foundation

Ever since Melinda French Gates announced that she was going to go it alone, we’ve been waiting and wondering, what’s next? Part of that answer is dedicating $240 million to women’s health and well-being, both in the U.S. and internationally. French Gates is dividing this sum into twelve $20 million, as yet unnamed ‘leaders’ to distribute to what she describes as “impactful charitable organisations”.

Communicating the benefits of vaccination 

The European Centre for Disease Prevention and Control (ECDC) has published a study on effective public communication on vaccination.

The report covers various issues that should be included in communication strategies, including: monitoring risk perceptions, addressing misinformation, using data visualisation and addressing the lack of institutional trust among some communities.

The ECDC has also opened a survey to identify priorities and preferences for establishing its ‘Community of Practice’ focusing on social and behavioural approaches to reducing infectious disease.

Health Technology Assessment to accelerate access to new medicines  

The European Commission has adopted new rules for the joint clinical assessment of medicines, it is hoped this will contribute to more rapide patient access to new products. The assessments will start in January 2025 and will initially focus on new cancer treatments and advanced therapy medicinal products.

“We want these medical technologies to reach our patients as quickly and equally as possible. Today’s adoption is a major milestone in facilitating better access to evidence-based healthcare and innovative technologies to patients across Europe,” said Health Commissioner Kyriakides.

Commission approves €1 billion state aid towards European joint health project

The European Commission has just approved up to  €1 billion in state aid for its first Important Project of Common European Interest (IPCEI) project in the health sector.

The project, called ‘IPCEI Med4Cure’, was jointly notified by six Member States: Belgium, France, Hungary, Italy, Slovakia and Spain. It is focused on innovative production technologies for medicines tackling antimicrobial resistance, rare diseases and emerging health threats and development of cell and gene therapies.

ECDC carries out first assessment of national health emergency capabilities

The ECDC carried out its first Public Health Emergency Preparedness Assessment (PHEPA) last week in Belgium. PHEPA is part of the Serious Cross Border Threats to Health Regulation introduced after the pandemic. Over the next two years, the ECDC will carry out individual country assessments and support national action plans by providing recommendations.

New parliament needs to finalise pharma package, begin controversial work on health determinants

Much has been achieved, as summarised in the recent communication on the European Health Union. But two major areas will spill onto the desks of the next European Parliament: the pharma package and delayed proposals on health determinants of; tobacco, alcohol, and dietary proposals.

EU determined to push forward with Pandemic Treaty negotiations despite setbacks

Despite an additional week of intensive talks, negotiators were unable to reach agreement on the text of a new Pandemic Accord ahead of the World Health Assembly convening in Geneva from 27 May to 1 June.

I want to empower patients, says Green group’s health expert

Tilly Metz, the Green/EFA group’s health expert in the European Parliament, argued that the EU needs to prioritise patients’ needs over the interests of big pharmaceutical companies, she told Euractiv in an interview.

Commission boasts EU’s health achievements as more work beckons

‘The European Health Union: Acting together for people’s health’ is how the Commission summed up its last five years of actions in health. The EU went “from firefighter to architect”, in the words of Commission Vice President Margaritis Schinas, but not everyone is convinced the current architecture is optimal.

News from the capitals

WARSAW
Poland’s vaccination finance decision-making process is being scrutinised by a specialised team of experts, comparing their methodology to European standards and identifying areas for improvement. Read more.

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THE HAGUE
Dutch drugs association wants clear, predictable reimbursement procedures from pharma package. The Dutch innovative medicines association, VIG, says amendments to the pharmaceutical legislation adopted by the European Parliament aren’t enough to ease concerns. Read more.

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BRUSSELS
Belgium developing new class of antibiotics, but incentives and market support needed. Europe’s pipeline of new antibiotics to tackle the growing antimicrobial resistance (AMR) crisis remains inadequate. Belgium is developing a new antibiotic class, but success depends on securing vital support and incentives.  Read more.

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STOCKHOLM
Sweden sees AMR rising, compliance impacted by healthcare crisis.
Antimicrobial resistance is on the rise, prompting the Swedish government to invite the European Centre for Disease Prevention and Control (ECDC) and the European Commission to review Sweden’s AMR strategy. Read more.

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PRAGUE
Czech healthcare workers secure major pay raise, concerns remain.
The Czech Health Ministry has circulated a draft law to urgently reform the salaries of healthcare workers and doctors, in a move to address long-standing remuneration issues and doctors’ protests. Read more.

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BUDAPEST
Hungary’s assisted dying laws under presidential consideration.
Hungarian President Tamás Sulyok is considering legalising euthanasia in Hungary by granting pardons to people assisting in the death of incurable patients. Read more.

Ends 1 June – World Health Assembly 

28-31 May – Working Group of Enforcement Officers on preventing and combatting illicit trafficking and counterfeiting of medicines meet in Ghent

29 May – HaDEA Info Session for grant applications in the areas of: novel antivirals development, innovation in medicine production, next-generation respiratory protection and vaccine development.

29 May – Belgian Presidency: High-level conference on personalised medicine: ‘Converging technologies Towards healthcare of the future’ 

29 May – Council’s Working Party on Pharmaceuticals and Medical Devices discusses the second compromise text on the incentives cluster of the pharmaceutical legislation 

29 May –  COREPER I of the shortages cluster of the pharmaceutical legislation

30 May – Belgium Presidency: European Health Data Space, for a Data-driven Health Transformation

31 May – Association of European Cancer Leagues’ World No Tobacco Day: How will Europe Achieve its First Tobacco Free Generation? 

31 May – European Health Data Space: for a Data-driven Health Transformation, event in Brussels

31 May – Innovative Health Initiative online event on antimicrobial resistance 

31 May – COREPER I 

3-7 June – CleanMed Europe 2024 conference on sustainable healthcare 

4 June – ‘Can people afford to pay for healthcare?’ DG Sante European Health Policy Platform webinar

4 June – Council’s Working Party on Public Health 

5 – 6 June – Council’s Working Party on Pharmaceuticals and Medical Devices

Health Reporter, Luisa Antunes, also contributed to this brief.

Read more with Euractiv