Unravelling the impact of shortages from a patient's perspective  

As young patient advocates, we have always believed that patients have a unique viewpoint that holds the key to transforming healthcare for the better.

Embracing patient voices in decision-making is not only a matter of equity, but also a path towards creating a more compassionate and effective healthcare ecosystem.

That’s precisely why when we heard about the Skills Training Course for Young Patient Advocates (STYPA), an exciting European Patients Forum (EPF) initiative, we knew this was an opportunity to develop our skills, network and collaborate with patients from around Europe. 

We, Eimear O’Rourke, and Idoia Morán from the European Allergy & Asthma Youth Parliament, participated in STYPA 2023 that took place from 13 to 16 July in Riga, Latvia, and offer our joint account from this interesting experience right below.

What is STYPA? 

Launched in 2017, STYPA is an annual training course run by EPF and addressed to young patients, patient advocates and patient carers. The aim is to raise awareness among the new generation of patients and enable a mutual learning process among participants. 

Past STYPA editions have been dedicated to key issues that concern the patient community in Europe, such as inclusion, sexual health and aspects of policy advocacy. This year the course focused on medication shortages.

With nearly 30 passionate young advocates from all corners of Europe coming together, the atmosphere at STYPA 2023 was invigorating. We all shared the same goal: to empower ourselves with the tools and knowledge needed to become effective advocates for our respective communities. The camaraderie amongst participants was inspiring, and we knew we were among like-minded individuals ready to make a difference.

STYPA 2023: unravelling the complex topic of shortages 

This year's theme, dedicated to medication shortages, couldn't have been more pertinent. The alarming rise of medication shortages across the EU is a common challenge. The COVID-19 health crisis only exacerbated the problem, putting patients at risk and adding immense pressure on national health systems. Moreover, given the current inter-institutional negotiations on the reform of the EU pharmaceutical legislation, which aims to address, among other topics, the issue of shortages in Europe, the sessions were incredibly timely. Through interactive sessions led by experts, EPF thoughtfully unpacked the complexities of shortages from a patient perspective.  

We were equipped with in-depth information on root causes, regulatory aspects, and the stakeholders involved. Indeed, we gained a comprehensive understanding of the intricate interplay between supply chain dynamics, regulatory frameworks, and pharmaceutical industry practices that can lead to medication scarcity. We learned how to engage in patient advocacy transparently and ethically, ensuring that our voices resonate on the topic of shortages. By analysing case studies and real-world scenarios, we did not only grasp the immediate consequences of shortages on patients' well-being, but also learned about the ripple effects on healthcare delivery, treatment plans, and healthcare costs.

For those like me (Eimear) who consider allergy and airway diseases as research and policy area of interest, advocating in this field involves ensuring an adequate supply and availability of essential medications such as adrenaline auto-injectors for anaphylaxis and inhalers for asthma and COPD. This is crucial for the safety and well-being of patients facing these conditions.

On the other hand, from the perspective of a caregiver and professional consultant on public health policies (Idoia), this educational experience provided a unique opportunity for me to delve into the complex issue of drug shortages, examining the multifaceted factors contributing to this challenge within the healthcare system.  Such knowledge makes my work more easily and ethically manageable. 

A gathering of young patient leaders - knowledge empowers advocacy 

If there is one key message to take home from STYPA, it is this: patients must be put in the driver’s seat in the decisions affecting shortages! 

Patients do not only bring a unique expertise but also understand the topic from various angles, including the perspectives of healthcare professionals and stakeholders. This well-rounded understanding empowers us to contribute effectively to discussions and assert a strong and influential voice in decision-making processes. As patients, we should engage in open dialogues and learn from others who are also affected by these shortages such as healthcare professionals, healthcare systems and other stakeholders. 

This is why one of the most rewarding aspects of STYPA 2023 was the focus on future engagement. We were inspired to initiate public awareness campaigns and advocacy efforts in our respective countries to combat shortages and improve patient access. 

Advocacy in action 

Overall, we are both convinced that STYPA 2023 has made a positive impact on our journey as patient advocates. The contacts we made, the knowledge we gained, and the experiences we shared have amplified our passion for creating a more inclusive and accessible healthcare environment. We are confident that this experience will help us to positively contribute to advocacy efforts for a patient-centred EU pharmaceutical framework in which access to medicine for patients will be ensured, and shortages will be addressed.

Joining a program like this, with young patients full of ideas and concerns, has strengthened our principles and advocacy skills, both as a practicing medical student and researcher (Eimear), but also as a caregiver and public policy consultant (Idoia). These principles are summarised in one phrase: equal and non-discriminatory access to healthcare for all.

Leaving STYPA 2023, we are filled with gratitude and determination to enact meaningful change in our respective communities.

Thank you to the European Patients Forum (EPF) for empowering us to be the change we wish to see in the world. Together, as young patient advocates, we will continue to contribute to the important discussions around improving patient outcomes and advocating for better healthcare policies for patients.

Learn more about the Youth Parliament on Allergy and Asthma, follow their LinkedIn and apply to become a member. 

About the authors: 

Eimear O’Rourke 
I am a medical student, a junior member of the European Academy of Allergy and Clinical Immunology, and a patient advocate. I joined the EFA Allergy & Asthma Youth Parliament in May 2022. 
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Idoia Morán  
I am consultant of public health at the Autonomous Community of Madrid and member of the Patient Advisory Group in the EU project of TOLIFE. I joined the EFA Allergy & Asthma Youth Parliament in October 2022.