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Coalition's input to expert groups on transparency and access

    The Coalition for Rare Diseases shares its perspectives on important issues related to personalized medicine and ensuring transparency and accountability in prioritization decisions for health and care services in Norway.

    Health policy is a complex arena, and within this field there are particular challenges related to patients with rare diseases. The Rare Disease Coalition has recently shared its views on two critical challenges affecting access to medicines for this patient group.

    Design of guidelines for health technology assessment: The Coalition believes that the design of HTA guidelines can have undesirable effects and is not always consistent with the principle of equal and fair access to medicines. They suggest that the guidelines should be developed in collaboration with external stakeholders, including academia and industry. Furthermore, the guidelines should be subject to open consultation to ensure transparency and trust in the process. The coalition emphasizes the importance of including a broad range of health economics expertise in the guidelines, and encourages regular updates to ensure that they are up-to-date and relevant.

    Involvement of stakeholders and notoriety: The coalition believes that lack of trust between different stakeholders in the decision-making process is a significant challenge. They argue that to address this challenge, open consultations must be established where clinicians, expert patients and industry can actively participate by presenting their views and having them thoroughly considered. This will contribute to increased transparency and trust in the decision-making process. The coalition points out the importance of documenting and logging these inputs and decisions to ensure full transparency of the process.

    In an era where personalized medicine and treatments for rare conditions are becoming increasingly important, it is crucial to address these challenges to ensure equal access to necessary healthcare for all patient groups.

    The Coalition for Rare Diseases is dedicated to working for patients with rare diseases in Norway, and their efforts to promote transparency and fair access to medicines are an important part of this work.