Access to medical supplies, specialist care, and awareness are three of the main challenges faced by people with an ostomy across Europe. These issues are highlighted by the Italian Federation of Incontinent and Stomised Associations (FAIS), which has initiated a European dialogue aimed at shedding light on a condition that is still largely overlooked by policymakers.
Access to medical supplies, specialist care, and awareness are three of the main challenges faced by people with an ostomy across Europe
“Ostomy is not a disease, but a condition to be managed,” emphasises Pier Raffaele Spena, National President of FAIS. Over the years, associations in Italy have achieved significant results regarding rights, but since the approval of the new Essential Levels of Care (LEA) in 2017, there has been a paradoxical regression, particularly concerning the principles of appropriateness and the freedom of choice for medical device. This has led to the necessity of looking beyond national borders to understand the challenges faced by other European countries.
A problem still little known
“We discovered that, at the European level, the issue of ostomy is completely unknown to policymakers: neither in Parliament nor in any official document has there ever been mention of the rights of people with an ostomy,” Spena notes. However, the numbers are far from negligible: it is estimated that over 700,000 people with an ostomy live in Europe. This figure is likely an underestimate, given the lack of systematic data collection, including in Italy.
“In Italy, we claim to have 75,000 people with an ostomy, which has been the same number for over twenty years – this is impossible. There is no updated tracking system: there are no registries, and market data is unreliable for understanding the true extent of care provided by the National Health Service,” Spena points out. A key issue highlighted by Spena is the disparity in the provision of medical supplies: while in Italy these supplies are covered by the National Health Service (SSN), in countries like Bulgaria, Greece, and Romania, people with an ostomy only receive a small amount of supplies and must pay for the rest out of pocket.
The European Project and the Brussels Event
To address these issues, Cittadinanzattiva–Active Citizenship Network and FAIS, have launched a European project with the primary goal of identifying and outlining effective strategies to facilitate access to healthcare and significantly improve the quality of life for patients.
“The first meeting took place in Brussels in November 2023, with 18 associations from 11 countries involved” Mariano Votta, Director of Active Citizenship Network recalls “We had both a training session and a discussion session to systematise national experiences and define a common roadmap.”
A return visit to Brussels, to the European Parliament, followed to present the results of this work: on 26 March 2025, a series of Civic Recommendations were presented, which emerged through active contributions of analysis, discussion, and sharing of activities and needs from associations in various EU member states.
Neither in European Parliament nor in any official document has there ever been mention of the rights of people with an ostomy
The event, hosted by the MEPs Interest Group “European Patient Rights and Cross-border Healthcare”, also served as the occasion to launch a social media communication campaign entitled “(In)visible” and reaffirm the principles of the Ostomy Rights Charter: “For the first time – highlights the President of FAIS – people with an ostomy are portrayed with the bag visible. Our aim is to make the invisible visible.”
Ostomy, in fact, falls under the category of “invisible disabilities”, those that are not immediately recognisable by outward appearance. Unlike evident physical disabilities, invisible disabilities do not necessarily present visible signs, making their social and institutional recognition even more challenging.
The 26 March event in Brussels marked a pivotal moment for the recognition of the rights of people with an ostomy across Europe. During the meeting, the Civic Recommendations were presented to European policymakers, with the goal of highlighting three key priorities.
The first priority is equity in access to medical supplies. Currently, there is no common policy at the European level. In some countries, full provision of devices is guaranteed, while in others, people face significant costs to access essential supplies. Pier Raffaele Spena stresses once again that one of the core principles in managing ostomy is the appropriateness of the medical device and the person’s freedom to choose it together with an ostomy care nurse. “A device that works for one person may not work for another. Every individual has specific needs, shaped by personal factors, previous experiences, and different surgical procedures.” While this concept may seem straightforward, in practice, the predominant criterion is often cost, with cheaper solutions being favoured while more expensive, but potentially more effective, options are excluded. Therefore, it is crucial to ensure equitable access to devices, offering a wide range of choices to meet the diverse needs of patients.
Every individual has specific needs, shaped by personal factors, previous experiences, and different surgical procedures
The second priority concerns access to specialist care. The distribution of ostomy therapy clinics is highly uneven, with entire regions lacking adequate facilities. “Medical tourism – Spena recalls – exists across Europe: those who live far from specialised centres must undertake long and costly journeys to receive the necessary care.” Again, this issue is about the distribution of resources. For example, in Italy, especially in Lombardy, clinics are distributed widely across provinces, while in other European regions, entire territories are without dedicated facilities, forcing patients to travel long distances to manage a condition that, in the months following surgery, requires continuous follow-up of at least 3 to 6 months. Inadequate monitoring can negatively affect the quality of life of patients.
Finally, the third priority concerns information and awareness. Institutional information campaigns are virtually non-existent. “Even in Italy, there is no initiative promoted by the Ministry of Health or the Regions: everything is left to the efforts of associations.” This highlights the need for greater commitment from institutions to raise public awareness and provide adequate information on issues related to ostomy.
A First Step for a Long-Term Battle
Spena reiterates the importance of initiating a path towards awareness and recognition of the rights of people with an ostomy at the European level: “We already know that many policymakers have little understanding of this reality, but the starting point is clear: we exist and have the right to be heard.”
According to Spena, this issue should not be viewed as a competition between categories of patients, but as an opportunity to support those facing more complex situations. “It’s not about determining who is better or worse off, but about joining forces to support those in more difficult conditions.”
The ‘(In)visible’ campaign will be available to everyone, free of charge, and adaptable to the specific context of each country
The value of the work carried out so far is also reflected in the ability to share tools and resources among the associations involved. “The ‘(In)visible’ campaign will be available to everyone, free of charge, and adaptable to the specific context of each country. Many associations, on their own, would not have had the means to carry it out, and it’s precisely this collaboration that makes the difference.”
There is still a long way to go, but a concrete signal has been sent. “The goal is to bring the issue to the attention of institutions and build an aware movement capable of making itself heard. We cannot be certain that we will immediately capture the attention of policymakers, but with Cittadinanzattiva-Active Citizenship Network, we are convinced that taking the first step is essential,” concludes Spena.
