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European Alliance for Personalised Medicine

Looking to the future as Boris says goodbye

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Good afternoon, health colleagues, and welcome to the European Alliance for Personalised Medicine (EAPM) update, which today focuses on EAPM’s constant push before the summer recess, writes EAPM Executive Director Dr. Denis Horgan.

Changing of the guard

UK Prime Minister Boris Johnson has finally resigned – EAPM looks forward to what a new UK leader will offer the health arena in the months and years ahead. As far as EAPM is concerned, we keep on going and are finishing the numerous publications that we mentioned in a previous update before the summer break.

Push to revamp rare disease EU framework intensifies for Czech presidency 

A system for orphan drugs are among the main suggestions for overhauling the European legislation on rare diseases, a topic included in the health priorities of the forthcoming Czech presidency of the EU. Around 8,000 rare diseases are threatening the lives of European citizens, but only 6% have a treatment. 

Many EU countries also face a lack of screening programmes that could allow an early diagnosis of the disease – a crucial step for potential treatment. Diseases affecting only a few dozen people per year require a pan-European approach. 

For this reason, the European Reference Networks (ERNs) for rare diseases were set up in 2017 to facilitate the exchange of knowledge and experience across the continent through the 1,500 dedicated centres. Stakeholders are now calling for a revision of the current legislation that could reshape the overall approach to rare diseases in the EU. “Discussions on the revision of European legislation for orphan drugs or access to medicines must be set in a broader framework that also includes diagnostics, healthcare, research and innovation,” said Yann Le Cam, executive director of the patient organisation EURORDIS. 

The European Commission is expected to develop an action plan on rare diseases, which lawmakers and stakeholders are pushing to be adopted by 2023. “At its heart, [the new EU legislation] must be an analysis of the needs of people living with rare diseases, as well as better coordination of individual European and national policies,” Le Cam added during a conference organised in the Czech Senate ahead of the Czech EU Presidency which will start in July. Prague supports such a plan. 

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Czechia also has broad expertise in rare diseases, according to Milan Macek, head of the Institute of Biology and Medical Genetics of Charles University and Motol University Hospital. 

The recent amendments to the national Public Health Insurance Act – which should make it easier for super-modern drugs to enter the Czech market – have been considered a significant shift in this regard. “The topic of rare diseases is one of the three main topics of the health part of our EU Presidency, the others being the Pharmaceutical Strategy and mental health issues,” confirmed liberal-conservative MP Roman Kraus, chairman of the Czech Senate’s health committee.

Brussels’ new innovation plan likely won’t meet startups’ demands

The European Union is taking steps to make sure it doesn’t miss out on the next tech wave — but it may not be enough.

The European Commission is due to present a list of actions to help digital companies scale up their businesses. It’s part of the bloc’s push into so-called deep tech, an umbrella term for advanced technologies heavily rooted in science and research, including artificial intelligence, blockchain and quantum computing.

After Europe lost the battle over consumer tech, it doesn’t want to repeat the same mistakes — but to even begin to compete with the United States and China, it must address a variety of concerns.

While 2021 was European startups’ biggest funding year to date, reports show the bloc still lags behind its geopolitical rivals on AI and blockchain spending. The number of information and communications technology specialists in the bloc is also still way off its 2030 targets, betraying gaps in recruitment efforts. The Commission’s new Innovation Agenda is expected to address both issues, according to multiple drafts. Also included in the agenda are nods to the innovation gap between Western and Eastern Europe, as well as national governments’ capacity to support startup growth, for which the agenda promises five “flagship” initiatives.

It remains to be seen whether the effort will impress the bloc’s startups — which already have spotty communication with EU-level institutions — given that a pot of money or a fully fledged rulebook is not on the table, while some key competencies belong to individual member countries.

Eighty-three percent of 172 customers of Irish fintech firm Stripe said that the EU’s policy process is designed to serve bigger, more established companies — while 61 percent said they felt “disengaged,” not voicing their concerns in Brussels as a result. When startups do speak up, they have a hard time figuring out who’s in charge: Internal Market Commissioner Thierry Breton or Innovation Commissioner Mariya Gabriel.

Pandemic far from over

Almost 500 million people have been infected with the coronavirus since March 2020 and new variants are still a threat. This Friday (8 July) marks two years since the World Health Organization (WHO) characterised the global spread of COVID-19 as a pandemic.

The UN health agency’s assessment was made six weeks after the virus was declared a global health emergency when there were fewer than 100 cases and no deaths outside China. Two years later, more than 6 million people have died. “Although reported cases and deaths are declining globally, and several countries have lifted restrictions, the pandemic is far from over – and it will not be over anywhere until it’s over everywhere,” said WHO Director Tedros Adhanom Gebreyesus on Wednesday (6 July). 

Speaking to journalists in Geneva, Dr Tedros reminded the world that many countries in Asia and the Pacific are currently facing surges of cases and deaths. “The virus continues to evolve, and we continue to face major obstacles in distributing vaccines, tests and treatments everywhere they are needed,” he said.

In that context, pandemic preparedness

The European Commission is planning to be better prepared for the next health crisis, both inside the bloc and on the global stage, and it’s seeking expert advice on how to achieve this. The Commission has launched a public consultation and a call for evidence on a new EU Global Health Strategy. The strategy should help the EU better respond if, and when, it’s faced with another global pandemic.

“The COVID-19 pandemic has shown the gaps in our global health security architecture,” said Health Commissioner Stella Kyriakides. To strengthen the bloc’s pandemic preparedness and response globally, Kyriakides called on experts and interested parties to help Europe “craft a strategy that responds to the important challenges we face together.”

WHO Director-General welcomes ACT-Accelerator fair share contributions from Norway and Sweden

WHO Director-General Dr Tedros Adhanom Ghebreyesus has welcomed contributions from Norway and Sweden to the ACT-Accelerator, which have taken both countries over their ‘fair share’ allocation. Contributions of US$ 340 million from Norway and US$ 300 million from Sweden will accelerate efforts to get vaccines into arms, facilitate access to new treatments and ensure health systems can meet the challenges of the COVID-19 pandemic. 

Norway and Sweden join Germany in having exceeded their fair share for ACT-A’s 2021/22 budget, with Canada pledging to do the same. ‘Fair share’ calculations are based on the size of a country’s national economy and what they would gain from a faster recovery of the global economy and trade. In February 2022, President Ramaphosa of South Africa and Prime Minister Støre of Norway – in their roles as co-chairs of the ACT-Accelerator Facilitation Council - made a call to 55 countries to jointly support global efforts to end the COVID-19 crisis and contribute their ‘fair share’ to the ACT-Accelerator agencies’ urgent needs. 

These contributions from Norway and Sweden reinforce the strong support that both countries have provided to the ACT-Accelerator since its inception in 2020

Tackling the health care backlogs

The NHS continues to experience the most challenging period in its history. The pandemic severely reduced the service's productivity and it is still hindering its ability to recover at a time when the backlog for physical and mental health services grows. These significant waits for planned care are having a damaging effect on patient's lives, however NHS leaders and staff are working tirelessly to work through the backlog. 

During the pandemic, NHS organisations demonstrated that they could innovate at pace, with the same creative thinking now being applied to waiting lists. Workforce is the number one limiting factor for NHS capacity and its ability to deal with the increasing backlog, with organisations taking action to ensure a ‘grow our own’ approach to recruitment, such as the Health & Care Academy in Powys Teaching Health Board.

And that is everything from EAPM for now. Stay safe and well, and enjoy your weekend.

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