#EAPM – From Global Conference to Captain Sir Tom Moore



Welcome, all health correspondents, to the final European Alliance for Personalised Medicine (EAPM) update for the week, writes EAPM Executive Director Denis Horgan.

Conference a great success

First up, the online EAPM Global Conference on 14 July was a resounding success – more than 480 delegates attended, with key note speakers present from across the world of personalised health. A full report will be available from Monday (20 July), and there is also an EAPM academic publication regarding the revision of the Orphan Regulations, an article entitled ‘Time for change? The why, what and how of promoting innovation to tackle rare diseases’, so be sure to check it out, and there is a little more about the orphan and pediatric regulations below.

Orphan and pediatric regulations en route from Commission

The European Commission is expected to present by the end of July an evaluation study on the pros and cons of the application of orphan and paediatric regulations, which deal with a niche segment of rare diseases that affect fewer than five in 10,000 people. The Orphan Regulation was introduced in 2000 and its main objective was to address the challenge of treating patients with rare diseases. The number of people who suffer from such diseases in the EU is around 246,000. And the Commission will publish two documents in parallel this month, one is a report commissioned by the Commission from consultancy group Technopolis on the functioning of the Orphan Regulation, which grants prolonged market exclusivity to drugs for rare conditions, and the second is a Commission staff working document that will conclude the evaluation of the regulatory frameworks for orphan and pediatric medicines.

EU health ministers’ meeting

On Thursday (16 July), three EU health ministers voiced broad agreement that the bloc needs enhanced powers in health policy, including beefing up the European Centre for Disease Prevention and Control (ECDC).

In short, the ECDC is going to get bigger, and hopefully better, and ministers agreed it needs more money, more staff and perhaps expanded powers.

WHO launches independent review panel on pandemic

Last week, World Health Organization (WHO) Director General Tedros Adhanom Ghebreyesus launched an independent review panel to evaluate the pandemic response by both the UN and diverse countries.


How much money can EU provide?

To be sure, health groups have some complaints concerning how the EU’s next seven-year budget will be apportioned. While the new EU4Health proposals have been widely acepted, Horizon Europe funding, with European Council President Charles Michel’s latest budget proposal offering €5 billion less than the Commission did for the EU’s flagship research programme, is causing a rift. The EU Health Coalition – which includes Brussels drugmaker and device lobbies, patient groups and other players – said on Thursday: “We are deeply concerned that a budget cut of Horizon Europe would put the EU’s strategic plans on hold. Also, we fear that this would undermine the fragile equilibrium between priorities and global challenges under Horizon Europe, and that the EU budget for health research would be jeopardized.”

Europe leads the field in face mask attitudes

Across Europe, nay, the world, in just a few short months, wearing a face mask has become a legal responsibility. Many now regard it as an essential act of social responsibility — even if others see it as an encroachment of the nanny state, there is no denying the social responsibility that citizens across Europe have shown on public transport, in shops, and many other areas in which individuals are confined.

COVID-19 lays inequalities bare

WHO regional director for Europe Hans Kluge, speaking this past week,
has said that the pandemic has exposed inequalities. “In Europe the people who were the richest, who could go to the ski resorts, sometimes brought COVID back to the poorer sections of the population who could not afford health care,” he said during an event on preparing for a second wave, organized by B20 Saudi Arabia.

UK scientist offers bleak coronavirus assessment

It’s clear that the outcome has not been good in the UK,” Patrick Vallance, the UK government’s chief scientific adviser, told MPs. Speaking before the House of Commons Science and Technology Committee, he said one of the lessons to be learnt from the pandemic was that data flows and data systems were “incredibly important”. At the beginning of the pandemic, he noted, the Scientific Advisory Group for Emergencies (SAGE) would have liked data that was difficult to get — for example, data on care homes. “Improvement in data flows is a key part of management of this and indeed other emergencies as we go forward,” he said.

Commission strengthens preparedness for future outbreaks

The Commission has presented immediate short-term measures to strengthen EU health preparedness for COVID-19 outbreaks. The Commission has from the outset coordinated the exchange of information and recommendations with regard to cross border health actions and measures. A continued vigilance and fast response from the Commission and the member states has been deemed essential to ensure that the spread of the virus can be contained and so that new, generalized lockdowns can be avoided.

The Commission is focusing on all necessary actions needed to enhance preparedness, including testing and contact tracing, improved public health surveillance and widened access to medical countermeasures such as personal protective equipment, medicines and medical devices. Actions also include measures on health-care surge capacity, non-pharmaceutical countermeasures, support to minorities and vulnerable persons, and activities to reduce the burden of seasonal influenza.

Worldwide pressure from pandemic

The COVID-19 pandemic has put unparalleled pressure across the EU and indeed around the world. Many countries had to face widespread transmission of the virus in the community. The EU and its member states have introduced measures to mitigate social and economic impacts, such as maintaining the functioning of the internal market, supporting the transport and tourism sectors, protecting employment and supporting medical care services for vulnerable groups. The Commission has also issued recommendations on travel and border measures necessary to protect the health of our citizens while also preserving the internal market. Member states are increasingly co-ordinating their response, which is absolutely vital in ensuring that the epidemiological situation remains low across the EU. The public health measures taken by the countries helped to decrease the numbers of new infections to a level that was manageable by health systems. This in turn allowed the progressive lifting of the various restrictions imposed and the reopening of most activities, guided by the European road map to lifting of coronavirus measures.

And, finally…

Some good news amidst the coronavirus anxiety and woe – Captain Tom Moore, the UK centenarian who went viral for his zimmer-frame aided fundraising efforts for the NHS, and who raised more than £30 million, is to receive a knighthood today (17 July).

I am certainly delighted and overawed by the fact this has happened to me,” he said, according to the BBC. “I thought this can’t be true, I’ve always said this won’t happen and it appears it actually has. I certainly never anticipated that this letter would arrive for me.”

The Queen, who is coming out of lockdown for the first time for a face-to-face meeting with Tom, will conduct the ceremony at Windsor Castle.

And that is all for this week – enjoy your weekend, stay safe, see you soon.




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