The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union

Presentation by Vytenis Povilas Andriukaitis, on May 6th, 2021 – 15th European Patients’ Rights Day.

Europeans need stronger health policy:

• We all celebrate the 15^th European Patients’ Rights Day in very important time. COVID19 is an awakening call for many. 2021 has been designated by WHO as the International Year of health and Care Workers in appreciation and gratitude for their unwavering dedication in the fight against pandemic. World health Day this year was dedicated to equity keeping in mind access of all people to vaccination. The Portuguese presidency of the Council of the EU on 7^th and 8^th of May will organise a Social summit with the aim to endorse the Action Plan of the European Pillar of Social Rights. And access to timely healthcare and cure will be included into it.

European Pillar of Social Rights

• Thus, building still tentatively European Social Union we see opportunity for the European health Union to become part and parcel of it. On 9^th of May the conference on the Future of Europe will start inviting all civic society and Patient’s Advocacy Groups to participate in it. And on 21 May 2021 in Rome the EC in cooperation with the Italian G20 Presidency will co-host the Global health Summit. In front of those events civic society and Patients Advocacy Groups voice is needed and to be heard.
• Civic society and Patient Advocacy Groups are demanding stronger health policy and more coordinated actions for health. Diseases do not care about borders, and their management should cross the borders too. In front of COVID-19 pandemic – nobody is safe until everyone is safe – is a lesson learned by all of us. We must care about everyone’s lives, and not just in the EU. We are at least more than 1 billion people leaving in European WHO region. And today like never a call to action, made by the Pan – European Commission on health and sustainable Development chaired by former Prime Minister of Italy Mario Monti to rethink broad health policy priorities, to step up investments and reforms in health- and social care systems keeping in mind UHC is especially important.
• Healthcare workforce shortages are ingrained common problems for many countries. In many regions within and between countries we can see lack of nurses and doctors. Medical deserts undermine people trust in our promise to leave no one behind. Some researches looked for clues because excess deaths differ across the EU MS in 2020. An increase of deaths in 2020 was compared with the number of hospital beds, doctors, and total healthcare personnel employed in the sector of human health. Correlation between total employment in the health sector and excess mortality appeared to be strongest.

• Increased public investment in health sector is needed in all countries to make progress towards universal health coverage and to improve people healthcare. And it is very important goal for all Patient Advocacy Groups to ask political leaders at all levels to treat health care sector as a vitally important productive sector of our economy. Health could be the most dynamic driver for the achievement of a social Europe. Health and wellbeing are two faces of the same coin of Social Europe.
• International cooperation for the Universal health coverage is very important in our fight against NCD’s, cancer or rare disease. No one country alone can treat patients with rare cancers and rare diseases. Very timely initiative “Europe’s Beating Cancer Plan” in line of our obligation “leaving no one behind” can be the most promising field of Pan – European cooperation in beating cancer. And it can show a leading example of global cooperation in this field. Another area – rare diseases are affecting up to 30 million in European region. And here we see efforts to cooperate at EU level on voluntary basis treating those patients through ERN.
• But as national rare disease policies and national cancer plans are not harmonized and equally prioritized across MS, RD and cancer patients are still subject to postcode lotteries and their outcome bare still hugely dependent on the place of birth and residency. And here we need to have shared competences between EU and MS, while preserving subsidiarity as a core principle. In food safety the EU and MS have shared competences, enshrined in the Lisbon Treaty, but in health area do not have, the EU can only facilitate, support, co-ordinate and encourage MS to cooperate in this field. And we need the European health insurance Fund to cover rare cancers and rare diseases.
• Record braking speed of vaccines development shows potential of international cooperation to develop lifesaving medical technologies. More generous public support for fundamental research is needed to provide help to millions of patients that need innovative treatment.
• Accessibility to lifesaving technologies and to innovative treatment is a right of all patients. Patients in Portugal, Germany, Lithuania, Italy or anywhere deserves to have equal access to innovative treatment and to be treated equally according to the same medical protocols. Our EU is unequal one speaking about access to health care and cure. This is not only unfair: it is preventable. And only the EHU can prevent it. If we all are thinking about “Leaving no one behind”, “Health in all policies”, “Patient centered” approach we need to have a strong genuine European Health Union, which must be enshrined in the Lisbon Treaty.

Europeans clearly articulate their priorities:

According to Eurobarometer in summer 2020 health appeared to be the 4^th most important issue facing the EU In winter 2021 health is leading the list with 38 percent of Europeans indicating health as the first or the second most important issue facing the EU.

European leaders today are much more sensitive to demands of patients than 4 years ago.

We all know a lot of unions – customs union, economic and monetary union, banking union, fiscal union, digital union etc. Some of them are enshrined in the Lisbon treaty, some derive from it as part of internal market. The aim and all main objectives of the EU are enforced by the Art. 3 of the TEU. Thus, health is not on the Art. 3 of the TEU and human health is out of shared competencies between MS and EU (only common safety concerns in public health matters as shared competence between MS and EU).

European Union is just at the very beginning of transforming itself into European Health Union

• Political debates on the first building blocks of the EHU just continue, concentrating on what can be done with existing legal, financial etc. instruments or fine tuning of existing instruments in parallel to develop new secondary legislation.
• Tradition to ignore health as a topic of European policy till now is strong across national governments, and European institutions. The EU does not take action” prevails “unless it is more effective than action taken at national level”
• Voices of patients are much more fragmented in comparison to those lobbying for Common Agricultural and other traditional EU policies.
• It is time to consolidate civil society and Patients’ Advocacy Groups forces in our desire to build a genuine European health Union.

The European Health Union is a new chapter in the development of the European project. The chapter that should be written by all of us.

• Let us disseminate and promote Manifesto for a European Health Union.
• Let us talk for more healthier face of European Treaties on European platforms devoted to the Conference on the Future of Europe. Europe is not just internal market per se.
• Let us challenge our national parliaments and governments. “Nothing for us without us”- our voice must be heard.
• Let us work with academia, public bodies and industry on design and advocacy of pan-European policies that provide more health for Europeans and net-present value for Member States, for Europe.
• We need more Europe in health, and we need more health in Europe. Green deal is on the agenda of the EU. We need to add “health and wellbeing deal”.
• Let us amend a part 3 of art.3 of the TEU which starts with “The Union shall establish an internal market “by one additional sentence “It shall promote universal health coverage by establishing a health union.” It can build a genuine European health Union.