Health occupied a substantial part of the policy agenda in the previous mandate. The response to the COVID-19 pandemic set the tone for health-focused policies that would mark this mandate, from the overhaul of the General Pharmaceutical Legislation and the proposal for the European Health Data Space to the launch of the EU4Health programme and Europe’s Beating Cancer Plan.

The new European Parliament and European Commission configurations have prompted Merck to reflect on our achievements so far and the vision for the coming mandate with regards to supporting and empowering informal carers.

Supporting carers, supporting patients

Estimates suggest that as much as 80% of all long-term care in Europe is provided by informal carers[1], ranging from spouses and children to extended family. Informal and formal carers are invaluable resources to society, yet their role often remains overlooked and undervalued. Our hallmark Embracing Carers® programme highlights the unmet needs of carers, supporting carer-focused initiatives worldwide by offering resources and empowering carers to advocate for their health and rights. In line with our patient-directed approach, we at Merck are committed to identifying potential solutions by consulting patients and their carers.

With every passing year, we consult more and more carers for diseases on which we are conducting research or providing treatment solutions. In June 2024, through our Patient 360° programme, we collected key insights from carers of individuals with multiple sclerosis and myasthenia gravis. The exchange provided invaluable insights on the diverse and evolving role of carers, the widespread guilt and hesitancy to seek support as well as the benefit of early interventions to empower and inform family carers.

An invigorating project for Embracing Carers® has been partnering with the Global Initiative on Ageing (GIA). Merck and GIA have worked together to curate a selection of online caregiving training modules designed to meet the diverse needs of informal carers. Now consisting of 10 courses, they offer professional guidance in English and Spanish on diverse caregiving topics, from carrying out essential daily tasks like feeding and hygiene to managing relationships, overcoming communication barriers, and managing finances.

Our partnership with the GIA fits into a larger framework of activities supported or led by Merck. Since 2017, we have supported over 60 European projects led by patient and carer organizations. In Spain, Merck has organized an annual “Carer School” since 2020, aimed at family members and non-professional carers of people with multiple sclerosis. Our engagement with the carer community has gained much notoriety, winning FarmaIndustria’s Somos Pacientes Award for Best Patient Service Initiative in 2023. In Hungary, the “Támaszadók program” (Carers' Movement), supported by Merck, was officially launched in late October 2024. The movement provides tools and information on mental health, home care, financial benefits, social policies while creating a platform where carers can share their stories. Fourteen patient organizations from oncology, cardiovascular diseases, neuro-immunology, and hospice care participated in the launch and committed to further developing the program and expanding beyond disease-specific groups. 

At Merck, we don't just talk the talk - we walk the walk.

Approximately 5% to 20% of employees in any company may be informal carers. For us, that amounts to anywhere from 3,000 to 11,000 potential carers in our workforce. Ensuring top-tier infrastructure for them is an integral part of our commitment as a leader in caregiving.

At Merck, we’ve invested in curating resources to support carers navigating how to balance work and caregiving duties. Our “Tools & Resources” repository features updated carer benefits and support information, notably our caregiving online training, completed by over 41,000 employees. We also provide worldwide flexible work arrangements and access to a 24/7 employee assistance hotline for critical support (including short-term counselling for employees and their families). Together, these initiatives foster a supportive workplace where our employees can thrive while making an impact on patients.

The challenges and experiences of informal carers are complex and multidimensional, affecting various aspects of their lives. The EU has come a long way in addressing carers’ rights. The adoption of the European Care Strategy and the transposition of the Work-Life Balance Directive into the national laws of all EU Member States are notable examples. However, much remains to be done. The conclusions of the Letta and Draghi reports call for innovations and interventions in healthcare and the pharmaceuticals sector to boost European market resilience and competitiveness. Pushing for policies that enhance social protections and increase financial support for carers is essential to these efforts (e.g. tax benefits and pension credits for carers). At the core of this work is the full implementation of the European Care Strategy and Council recommendation on access to affordable high-quality long-term care, ensuring informal care is not the default care option. Last but not least, there is a pressing need for an integrated “mental health in all policies” approach that considers the mental well-being of informal carers as a central component of sustainable long-term care systems. This cross-sectoral approach calls for policies that formally recognize informal carers as essential partners in care and prioritize prevention and resilience-building initiatives.

Supporting informal carers isn’t just about helping; it’s about elevating entire communities. Our vision for the future remains clear - we at Merck are committed to working alongside policymakers, civil society, and industry to drive changes that cement the indispensable role of informal carers within healthcare and to continue advocating for their recognition and rights.

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Merck is a leading science and technology company, operating across Healthcare, Life Science and Electronics.

Established in 2017, Embracing Carers® is an initiative by Merck aimed at filling the need for better support and recognition of carers around the world.

Established in 2022, the Global Initiative on Ageing (GIA) was conceived by a group of civic leaders in coordination with different institutions of the United Nations. GIA’s mission is to achieve the goals set by the United Nations Decade of Healthy Ageing as well as their Sustainable Development Goals by improving the standard of living, participation and inclusion of the world’s ageing population through virtual learning and policy platforms.

Eurocarers defines an informal carer as “a person who provides – usually – unpaid care to other people with a chronic illness, disability or other long-lasting health or care need, outside a professional or formal framework”.

Analysis by WELL CARE Project, from October 2024, on the Legislation, Policies, Care Frameworks and Funding Schemes in the EU aimed at supporting both LTC workers and informal carers, is available here

[1] European Commission: DG for Employment, Social Affairs and Inclusion and Zigante, V., Informal care in Europe – Exploring formalisation, availability and quality, Publications Office, 2018: https://data.europa.eu/doi/10.2767/78836