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European Children's Hospitals Organisation

ECHO

ECHO's Vision: ECHO’s vision is to be a united voice of children’s hospitals promoting children’s rights, holistic care for patients, professional excelence, and frienship among people of different countries. ECHO' Mission: ECHO’s mission is to “advocate for children’s health and their access to the best quality care through the collaborative work of its members.” ECHO is grounded in the belief that we are stronger together and that the future of healthcare lies in teamwork and collective action. An active network of children’s hospitals is essential for addressing the health challenges facing children and young people in Europe today. By bringing large tertiary care paediatric hospitals together, ECHO aims at establishing the pan-national infrastructure required to collect the data required to guide the decisions to improve access, quality and efficiency of care. Another factor that lead to the formation of ECHO was the recognition that that children’s hospitals play (...)

Lobbying Activity

Response to European Health Emergency Response Authority

23 Feb 2021

Please find attached the input of the European Children's Hospitals Organisation (ECHO).
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Response to Revision of the EU legislation on medicines for children and rare diseases

6 Jan 2021

Please see the attached feedback from the European Children's Hospitals Organisation (ECHO).
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Response to Delivering for children: an EU strategy on the rights of the child

5 Aug 2020

The European Children’s Hospitals Organisation (ECHO) welcomes the Commission’s goal of “mainstreaming children’s rights across all relevant EU areas of work.” ECHO represents leading children’s hospitals caring for children with complex, chronic, and rare diseases. We offer a unique perspective on the needs of children, young people, and their families, including the need to protect and promote the rights of children in hospital. The United Nations Convention of the Rights of the Child (CRC) establishes universal rights of children. The CRC directly relates to the design and delivery of healthcare, with specific implications for caring for children in hospital. Although the CRC has been ratified by all countries in the European Union, there is evidence that the rights of children and young people are not fully realized across healthcare settings. A study in Italy assessing the implementation of children’s rights in hospital found implementation to be limited and varied by geography and type of institution. Similarly, a recent survey of paediatricians in Germany found that there is not sufficient awareness of child rights amongst those surveyed. To help address this gap and assist hospitals moving forward in applying a rights-based approach to the provision of healthcare and quality improvement, the European Children’s Hospitals Organisation calls on the Commission to ensure the rights of children within healthcare systems, and specifically in hospital, are part of the EU Strategy on the Rights of the Child. It is important to note that supporting the rights of children in hospital goes beyond the right to high quality health. These include the right to: 1. Equality and non-discrimination, 2. Play and learning, 3. Information and participation, both at the individual and institutional level, 4. Safety and a child-friendly environment, 5. Protection from harm, and 6. Pain management and palliative care. Some of the services that support these rights, like play or art therapy, are not always part of health systems budgets meaning that some rights may be less fulfilled than others. - We recommend that the Strategy include an assessment of how well health systems in Europe meet the full spectrum of rights of children. This would build of the 2017 report requested by the Commission, “Implementation of the right to health care under the UN Convention on the Rights of the Child.” Whereas this report focused on the right to access health services, we suggest that the Commission should also be assessing to what extent health services fulfil the rights of children. Where gaps are identified, recommendations for future action could be made. - We also call on the Commission to ensure that future research funding, such as Horizon Europe, has resources dedicated to the field of child health services that would support the design, implementation, and evaluation of new programmes aimed at supporting the rights of children interacting with health systems. Other EU initiatives that should include a child rights focus include: - Pharmaceutical Strategy - EU4Health - Cancer Plan - Green Deal The Green Deal has significant implications for the rights of children. According to the Lancet Countdown on Health and Climate Change, “the life of every child born today will be profoundly affected by climate change.” Therefore, we urge the Commission to make the rights of children central to the Green Deal. Aggressively addressing air pollution, a major contributor to global warming and something know to have dramatic and lasting effects on child health, is one of many ways to do this. Finally, children and young people have the right to be heard and taken seriously. We strongly urge the Commission to include young people in the design and implementation of the EU Strategy on the Rights of Children. For further information on strategies for addressing the rights of children in hospital, please see the attached ECHO Child Rights Toolkit.
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Response to Pharmaceutical Strategy - Timely patient access to affordable medicines

6 Jul 2020

The European Children’s Hospitals Organisation (ECHO) welcomes the Commission’s objective of ensuring Europe’s supply of safe and affordable medicines. ECHO represents leading children’s hospitals caring for children with complex, chronic, and rare diseases. We offer a unique perspective on the needs of children, their families, and the professionals who care for them. We also represent hospital administrators who are charged with ensuring that all children have access to the medications they need to stay healthy. Although the EU Paediatric Regulation has helped increase the availability of medicines for paediatric patients, many children still face significant barriers to accessing the medicines they need. These barriers include: - A limited availability of medicines for conditions specific to children, such as childhood cancer or other rare diseases - A lack of paediatric formulations - The high cost of new therapies for hospitals and health systems, and - Ongoing drug shortages. Patient centred care To ensure that the strategy is “holistic” and “patient-centred,” any new drug development strategies should involve the full range of stakeholders including patients and patient advocates, regulators/payers, academics, and clinicians. Many children’s hospitals already involve youth in clinical trials. These or similar networks could be utilized to inform the Pharmaceutical Strategy to ensure patient needs are centred. Research and Innovation We agree with the Commission that innovation efforts are not always aligned to public health and health system needs. This is especially true in the case of paediatrics where, since 2007, only 9 paediatric specific anti-cancer medicines were authorized compared to over 150 for adult cancers. To address this gap we recommend that: - New drug development must be driven by scientific data and the mechanism of action of drugs, not by the adult market potential. - Additional mechanisms to incentivise the pharmaceutical industry to conduct dedicated paediatric pharmaceutical research are also needed. Pricing and Accessibility The high cost of new therapies can be a barrier at the health system level, but can also post a challenge for hospitals charged with providing care to patients with complex diseases. This barrier to access can contribute to geographic disparities in health outcomes for children across Europe. We need joint strategies to ensure all health systems and hospitals can afford to provide new therapies once they come to market. Potential strategies include: • Supporting negotiations between member states and the pharmaceutical industry to regulate pricing. • Linking the price of treatment to favourable health outcomes. Supply Chain Paediatric patients are at particular risk of harm due to drug shortages. One reason is the decreased amount of quality paediatric data to guide the selection of alternative medications. Furthermore, alternative products may also carry a higher risk of paediatric-specific adverse effects. To address supply chain issues affecting children in hospital we recommend that the strategy actively involve paediatric pharmacy specialists to help identify solutions. We also recommend that the strategy facilitate communication and collaboration between children’s hospitals to promote information exchange to share best practices in addressing critical drug shortages. Sustainability ECHO also agrees with and strongly support the Commission’s aim of addressing the environmental risks associated with medicines. The climate crisis is one of the greatest threats to child health and children’s hospitals are committed to making sure children are healthy in and out of hospital. Pharmaceuticals can be a significant part of a health system’s environmental footprint. Standards and tools are needed to support hospitals in implementing sustainable procurement initiatives to ensure that the medicines we use to make children healthy are not hurting the world they live in.
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