Vigenin: Let us guarantee quality care for patients with rare diseases

“Longer life must go hand in hand with a dignified quality of life for every European citizen. That is why the conversation about care for elderly patients with rare diseases, and in particular with primary ​.” This was stated in Brussels by the Bulgarian MEP from the Group of the Progressive Alliance of Socialists and Democrats in the European ParliamentKristian Vigenin during the discussion on one of the most underestimated challenges facing health systems, – care for elderly patients with rare diseases. In his view, what these patients need is a comprehensive approach.

The MEP, together with the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and his colleagues from different political groups, brought together representatives of the institutions, the medical community and patient organisations.​ ​​a ​ ​ ​ ​ ​ ​​​ “Behind every health policy stand real human lives”, the MEP told them.

New challenges for health systems

Vigenin focused on the new challenges arising from advances in medicine. “Now people with these conditions live longer. But this raises new questions: it is not enough simply to extend life , we have to guarantee its quality throughout the whole life cycle.”

In his words, health systems are currently not prepared to meet these needs. “Health systems remain too focused on hospital treatment instead of the integrated care that elderly patients actually need,” he explained. Vigenin drew attention to the particularly worrying situation in Bulgaria: “In our country access to treatment is often delayed, and care for elderly patients remains a challenge.”

The need for systemic change

The MEP believes it is high time for systemic change: “It is clear that we have to move from short-term solutions to long-term, comprehensive care. Let us build better coordination, support for families and real recognition of the role of informal carers.”

Vigenin noted that the topic is not a niche one, but a question of the future of an ageing Europe. That is why, in his view, rare diseases need to be a focus and to be included in key European policies such as the Rare Diseases Plan and the Intergenerational Fairness Strategy.

As rapporteur on the topic in the European Parliament, Vigenin said he will continue working actively so that these priorities receive real support. “We cannot allow ‘rare’ to mean ‘forgotten’,” he warned in conclusion.