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Healthcare

Every citizen has the right to access health service independently of their condition, disease and income, as reflected in the Charter of Fundamental Rights of the European Union. However, the ways and means to access healthcare services are the responsibility of each EU Member State, especially when it comes to preventive care and medical treatment.

While healthcare itself is not a competency of the European Union, EU institutions are provided with certain powers regarding health. Current issues affecting healthcare on the EU level relate to cross-border healthcare and EU cooperation in Health Technology Assessment (HTA).

From a diagnosis perspective, citizens heavily benefit from a healthcare system that grants access to high-quality healthcare professionals and services, and unleashes the full potential of knowledge. For asthma, allergy and COPD patients, the backbone of such a system requires the promotion of the education of both patients and healthcare professionals, the encouragement of scientific research on our disease areas, and the roll-out of the digital aspects of health. 

Healthcare professionals’ training

Access of patients to well-trained professionals and effective healthcare services is of paramount importance for patients, as it facilitates timely and accurate diagnosis, as well as better decision-making in emergency situations. In addition, some patients suffer from chronic and/or severe conditions that require close, knowledge-based monitoring and long-term commitment by healthcare professionals.

Science-driven decisions

At EFA we believe that open, transparen, and evidence-based research is key in informing policy-making and enabling investment in healthcare innovation. As patient representatives, we are keen not only on producing patient-driven evidence to help patients meet their needs, but also on having the guarantee that the decisions affecting health are based on valid, impartial science. These are the principles we have promoted on a number of occasions, including in the context of the Horizon 2020 Scientific Panel for Health, and in the discussions on the next Framework Programme on Research and Innovation.

E-health

Digital Health has many benefits for patients. To start with, allowing access for healthcare professionals (HCPs) to patients’ health electronic records enables HCPs to picture patients’ health history.Therefore, this access help HCPS make timely and accurate diagnosis and better care decisions, creating more confidence and collaboration between patients and healthcare professionals. The collection of patients’ data also allows emergency teams to make the best decisions in emergency situations. Also, digital health permits patients and the healthcare community to easily manage chronic diseases by tracking and monitoring the disease on a daily basis. As a consequence, this contributes to healthcare cost reduction, more access in its broad sense and better health outcomes.

Still, there is an open debate on how to find the right balance between ensuring patients’ data confidentiality and how to make it available for public health, healthcare and research purposes, while ensuring ethical and confidential use of it.

EFA is a member of the EMA Digital Health task group 

In particular, EFA’s work is currently focused in the following policy priorities:

  • Adopt an EU strategy on chronic diseases with disease specific chapters;
  • Strengthen patients’ safety, improve accuracy and quality of information to patients, boost health literacy and patients’ participation in decision-making;
  • Ensure early and accurate diagnosis of allergies and chronic respiratory diseases through increased training for healthcare professionals, development of national programmes, registers and spirometry testing;
  • Eliminate discrimination of patients based on their disease or condition;
  • Ensure that more funds are allocated for EU health policy, programmes and prioritise investments in research of allergic and respiratory diseases.

EFA’s Director Susanna Palkonen is the chairperson of Patient Access Forum, a patient-led multi-stakeholder network bringing together patients, the medical and public health community, industry, and the European and member states policy-makers and institutions.

Authorisation of medicines and medical devices

All medicinal products for commercial human use in the European Union are authorised by the EU or a Member State before they enter the European single market. To be authorized, they need to comply with the good manufacturing practice guidelines applicable within the European Economic Area. Medicinal products are then monitored throughout their lifespan to guarantee that in the case of adverse reaction or unacceptable risk, they can be quickly withdrawn from the market. This is done through the EU system of pharmacovigilance. 

Through the European Medicines Agency (EMA) the EU coordinates the scientific evaluation of the quality, safety and efficacy of medicinal products and provides scientific advice to ensure the highest possible level of public health protection. Since 2010, EFA has been a member of the Patients and Consumers Working Party ofEMA. We are closely involved in EMA activities to bring the patient perspective toasthma, allergy and COPD medicines.

Medicines

In the 1800’s, early drugs were derived from plants and supplemented by animal materials and minerals. These drugs were mainly discovered through a combination of trial and error experimentation, observation of human and animal reactions and they were the only available treatments until recent times. Scientific techniques to drug discovery and development began in the 1900s.

From then onwards, more and more drugs were discovered, tested and synthesized in large-scale manufacturing plants. But drugs are not ordinary consumer products. In most instances, consumers are not in a position to decide when to use drugs, or which drugs to use, how to use them and to weigh potential benefits against risks. No medicine is completely safe. Professional advice from prescribers or dispensers is necessary in making these decisions.

As end-users of medicines, we at EFA advocate for:

  • Improved involvement of patients in all decisions influencing their health, especially when it comes to risk-benefit analysis and safety;
  • Stricter controls that guarantee the safety of the medicines entering the EU single market.

Medical devices

Medical devices cover a large spectrum of products. In particular, for patients with chronic disease, medical devices are fundamental as they can increase life expectancy and quality of life. 

Inhalers, nebulisers and adrenaline injectors are widely used medical devices for asthma and COPD patients. In case of anaphylaxis, the lives of patients with allergies can be saved thanks to a medical device that injects epinephrine into their bodies.

Medical devices are of great importance for people living with allergy and airways diseases. At EFA we therefore advocate for:

  • Stricter regulation with increased patient-involvement in medical devices that ensures patient safety above market conditions;
  • m-Health solutions to be considered in certain cases as medical devices;
  • Systematic quality-check and control of medical device components with greater transparency and information provided to the public.

Pharmacovigilance in the European Union

All medicinal products for human use commercial in the European Union are authorised either by the European Commission or a Member State before they enter the European single market. To be authorised, they need to comply with the good manufacturing practice guidelines applicable within the European Economic Area. Medicinal products are then monitored throughout their lifespan to guarantee that in the case of adverse reaction or unacceptable risk they can be quickly withdrawn from the market. This is done through the EU system of pharmacovigilance.

Personalised Medicine

Personalised medicine is an emerging medical approach that enables taking tailored medical decisions, practices, interventions and products to individual patients according to their predicted responses to treatment or risk of developing a disease. The approach suggests shifting attention from diseases to individuals, focusing more on patient-specific elements such as lifestyle and environment. 

Apart from better health outcomes and a more cost-effective use of healthcare, personalized medicine promises patients a better management of health by granting access to information about disease prevention and treatment. Asthma and allergies have served as pilot diseases for the development of personalized medicine, due to their complex nature.

Welcoming this evolution of healthcare systems, EFA highlights the potential of personalized medicine to give patients timely and equal access to their treatments. Therefore, our aim is to ensure that the process from general healthcare to personalised treatment is open and participatory for patients. 

Clinical Trials are research conducted in humans to prove the effects of one or more investigational medicinal products. All investigational medicinal products have to undergo clinical trials to test their efficacy and safety before entering the European Union market.

In light of the EU’s need for more accessible and innovative healthcare systems, questions on sustainability receive increasing attention. The combination of an ageing population and the expansion of chronic diseases drives public expenditure in health promotion upwards, creating pressures on the resources. Therefore, decision-makers often have to face the twin objectives of containing costs and ensuring high accessibility and quality of services.

EFA advocates for the sustainability of health systems through policy solutions at the European level that promote greater collaboration and participation among Member States, as well as stakeholders. In this respect, we believe that the Cross-Border Healthcare Directive includes principles that benefit both causes: patients’ access and Member States’ budgets.

Two of the most prevalent sustainability aspects of healthcare systems are the costs related to the hospitalisation and the reimbursement of healthcare services. 

Hospitalisation

Hospitalisations are rising in the EU – so are the costs linked with it. Not unexpectedly, this has also a negative impact on the quality of care, as countries with more hospitalisations per capita tend to  also have higher shares of preventable ones, an EU study has shown. In line with wider tendencies, all EFA disease areas have seen their numbers of hospitalisations increase sharply, with the case of asthma and allergy among children being particularly alarming.

Reimbursements

National Authorities in Europe are responsible for setting prices of medicines and deciding the treatments that will be reimbursed under their social security system. The pharmaceutical pricing and reimbursement systems established by Member States are usually quite complex. Each country uses different schemes and policies, adapting to its own economic and health needs. These national systems are under constant adaptation in order to take account of political priorities, market evolution and patient needs.

The European Union has a major role to play in this area. Pricing and reimbursement systems are closely linked to the realisation of European policy objectives, such as the internal market, pharmaceutical competitiveness, sustainable research and development or human health protection. To ensure that national pricing and reimbursement decisions do not interfere in the functioning of the internal market, the EU has adopted the “Transparency Directive”. 

The European Commission initiatives in the field of pricing and reimbursement therefore seeks to foster cooperation through the establishment of a structured dialogue between the competent national authorities and all relevant stakeholders. The core objective is not only to enhance the functioning of the internal market, but to also ensure that national systems achieve an adequate balance between cost-containment, pharmaceutical innovation and patient access to medicines.

Reimbursement policies have the potential to widen health inequalities between citizens and at EFA we strongly advocate for:

  • A common European approach on reimbursement for chronic diseases;
  • The systematic reimbursement of preventative care for asthma, allergy and COPD;
  • The adoption of reimbursement rules that ensure patients' access to medicine and good treatment.

Access to healthcare is one of our key work and we are currently focused in the following policy priorities:

  • Adopt an EU strategy on chronic diseases with disease specific chapters;
  • Strengthen patients’ safety, improve accuracy and quality of information to patients, boost health literacy and patients’ participation in decision-making;
  • Ensure early and accurate diagnosis of allergies and chronic respiratory diseases through increased training for healthcare professionals, development of national programmes, registers and spirometry testing;
  • Eliminate discrimination of patients based on their disease or condition;
  • Ensure that more funds are allocated for EU health policy, programmes and prioritise investments in research of allergic and respiratory diseases.

Our advocacy activities on healthcare are voiced and supported by the European Patients’ Forum (EPF), an EU umbrella organisation of which we are full members.

EFA’s documents and activities in access to care