The current legislative draft states UMN exists if a disease is either life threatening or severely debilitating and there are no therapeutic options available or, if options are available, high mortality and morbidity remain.

Further, does this proposed definition account for patient perspectives? This question is at the heart of the questions I asked Elena Ruis de la Torre, Executive Director of the European Migraine Headache Alliance (EMHA). Here is what she said.

As a patient leader and as someone who suffers from migraine herself where do you see the existing unmet need?

“Migraine is a debilitating neurological condition that can have a profound impact on the quality of life for those who experience it and there are several areas where there is an existing unmet medical need:

·         Lack of Targeted Medications: While there are medications available for migraine treatment, many patients experience limited efficacy with these drugs. There's a need for more targeted medications.

·         High Morbidity and Disability: Chronic migraine can severely impact a person's ability to lead a normal life. Existing treatments often do not provide sufficient relief.

·         Preventive Therapies: There is a need for more effective preventive therapies to reduce the frequency and severity of migraine attacks. Current options can have significant side effects and are not always effective for all patients. The most innovative ones have a lack of access.”

Considering the draft definition of UMN specifically, how does it compare to your experience of migraine?

“I firmly believe that the definition of UMN as stated in the proposed legislation falls short for conditions like migraine and headaches.

The rate of morbidity for migraine and headache conditions, while not life-threatening, is still significant and impactful on the daily lives of European citizens. If you have severe migraine and you don’t get the appropriate treatment, it’s very possible that you won’t die because of your migraine but you will not be able to enjoy your life either.

The draft definition, while valuable for addressing certain UMN, may not capture the complexity of conditions like migraine, potentially limiting better outcomes for patients"

As members of the European Parliament (MEPs) review the legislation, what would you like them to understand about the patient experience of UMN?

“MEPs should approach the review of legislation related to UMN with a holistic understanding of the diverse and complex experiences faced by patients, creating a legislative framework including:

·         Patient Needs: Recognize that UMN are not limited to life-threatening conditions but also include diseases that significantly impact the quality of life and daily functioning.

·         Quality of Life: Understand the profound impact that unmet medical needs have on individuals and their families.

·         Patient-Centered Approach: Patient perspectives and experiences should be central to any legislative efforts aimed at addressing unmet medical needs. Patients and patient advocacy groups should be actively involved in the decision-making process.”

Ingrid Mcgowan

Head of International Patient Advocacy

This article was produced in partnership with AbbVie. The Question and Answer with Elena Ruis de la Torre was conducted via email. The answers provided are her own. 

AbbVie SA/NV - BE-ABBV-230158 (V1.0) – November 2023