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European Migraine and Headache Alliance

EMHA

The European Migraine and Headache Alliance is a non-profit patient association, which functions as an umbrella organisation for different patient groups across Europe.

Lobbying Activity

Meeting with Aldo Patriciello (Member of the European Parliament)

27 May 2025 · Information/participation request on Migraine Stigma Event

Meeting with Tomislav Sokol (Member of the European Parliament) and MEDICINES FOR EUROPE and

28 Jan 2025 · Health Policy

Response to Health technology assessment – Procedural rules for the assessment and management of conflicts of interest in joint wo

26 Jun 2024

The European Migraine and Headache Alliance (EMHA, address the following points as key considerations, highlighting the main issues that need attention: An essential element to address is the patient-centered approach, as they are the ones who share and understand firsthand the realities and challenges they face throughout the entire medication cycle. Their unique insights provide invaluable context and understanding of the practical impacts and outcomes of treatments. In other words, it underscores the importance of including the perspectives of both patients and clinicians throughout the lifecycle of the medication. By doing so, we ensure that the evaluation process is informed by those who directly experience the effects of medical treatments. The HTA-R must facilitate patient-centered approaches without creating obstacles, ensuring that the opinions of patients and clinicians are systematically incorporated into the HTA process for better evaluation outcomes. This inclusive approach not only enhances the relevance and accuracy of the evaluations but also promotes a more holistic understanding of the benefits and challenges associated with different treatments, ultimately leading to improved healthcare decisions and patient outcomes. Furthermore, the presence of private funding from pharmaceutical companies to the EMHA should not lead to a deprivation of interests and rights, as this investment serves a dual purpose. Firstly, patient associations benefit from enhanced growth and visibility programs, which enable them to expand their reach and impact. These programs provide essential resources, attract more members and supporters, and strengthen their overall capacity to advocate effectively for patient needs. Secondly, pharmaceutical companies gain value by investing in these patient associations, as they are their potential clients. In other words, it supports moving away from rigid financial thresholds for civil society organizations, thus recognizing the importance of transparent support from the private sector. It emphasizes the need to consider the specificities of these organizations when applying exclusion measures. Another crucial point to address are the constraints set forth and detailed in Annex II, which are highly limiting. Given the high relevance and indispensable nature of the participation of expert researchers, who bring invaluable expertise in their field, there should be greater flexibility than that prescribed in Annex II. Therefore, it is recommended to manage the rules for expert participation through guidance documents rather than stringent regulations, allowing for flexible and adaptable solutions. By doing so, we can ensure that the involvement of experts is not hindered by overly rigid frameworks, thereby enriching the HTA process with their specialized knowledge and insights. This approach would facilitate the seamless integration of expert opinions, fostering a more comprehensive and effective evaluation process that benefits from their invaluable expertise and experience. Advocacy for transparency in managing potential conflicts of interest is essential, rather than resorting to the exclusion of valuable experts. It is imperative that any conflicting interests be fully disclosed and acknowledged throughout the evaluation process. Transparency should be the guiding principle behind mitigation measures to ensure that collaborative work remains of the highest quality, particularly in innovative and rapidly evolving fields. By embracing transparency, we can maintain integrity and trust, while also leveraging the expertise and insights of all stakeholders involved. Finally, Annex II imposes stringent restrictions on higher-level experts, such as presidents or equivalent roles, significantly constraining their participation. Addressing this rigidity is crucial, considering that specialized associations like EMHA, often lack the large teams to avoid placing members in such high-ranking positions.
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Meeting with Sirpa Pietikäinen (Member of the European Parliament)

26 Oct 2023 · EU Public Health legislation