The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) has recently published the findings from its project “Mapping of innovative medicines and devices in EFCCA member countries” in which 31 countries participated.

Why a Mapping project?National health systems and access to various treatments tend to be unequal in different European and non-European countries where EFCCA is represented, in particularly with regards to new, innovative treatments and devices for people with Inflammatory Bowel Disease (IBD). In some of these countries, there are no national registries of IBD patients available that would assist in obtaining relevant information. Therefore EFCCA wanted to find out the situation in each of the EFCCA member countries in terms of access to and availability of innovative treatments in order to highlight existing health inequalities in Europe and to develop the grounds for advocacy work aimed at equal access to treatments.

How we did it

Seven national IBD associations participated in a pilot phase to test an online survey which had been developed by an EFCCA working group coordinated by our Research and Project Coordinator Sanna Lönnfors. Once the online survey had been optimized the working group set out to collect data from all EFCCA members. Respondents were encouraged to cross-check the information provided with the national authorities in their country.

Next steps

The findings of the mapping report clearly show discrepancies across Europe in terms of access to and availability of innovative treatments and devices. EFCCA and its national member associations will use this data to work with national and European policy makers to stress the importance of equal access to treatment as well as the need of accelerated access to new innovative therapies.

Since the issue of innovative medicines is a constantly changing environment EFCCA plans to create an observatory of innovative medicines and devices aimed at keeping information updated and accurate.

Benefits for patients

The findings of the report will add to our exchange of knowledge and give us a better understanding of European healthcare systems. The fact sheets for each country are a handy resource for someone considering working or studying in another country and will improve the mobility of people with IBD in European countries.

Ultimately, we believe that this work will facilitate and accelerate equal access to treatment in all countries and improve not only the quality of care but also the quality of life for people living with IBD.

To read the report go to: http://www.efcca.org/sites/default/files/Final%20Report%20Mapping%202018.pdf

1. What’s on the top of your agenda?

Our top priority at the moment is patient safety. As exclusivity rights for some biologics medicines are expiring, similar biological medicines,  so called biosimilars, are being developed with some already available on the European markets.

We want to ensure that patients receive accurate and unbiased information concerning these latest Inflammatory Bowel Disease (IBD) treatment options and we have launched a BAB (Biologics and Biosimilars) survey to address this issue. We are also working with key decision makers to ensure that patient safety and the patient perspective is included in any debate concerning patient safety and medicines regulation.

2. Why does your organisation exist?

Our organisation exists in order to represent the over 2.5 million people in Europe who have Crohn´s disease and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease). We want to give people with IBD a louder voice and higher visibility in Europe and we want to improve their quality of life and ultimately find a cure.

3. What is your biggest achievement as an organisation?

Our biggest achievement as an organisation is to be recognised as the voice of the IBD community, not only in Europe but worldwide. As IBD is sadly becoming more and more prevalent, we are being approached by many IBD associations or informal groups of people living with IBD. From as far a field as New Zealand, Argentina, Puerto Rico, South Africa etc., they contact us with requests to assist them with raising awareness, sharing information and advocacy work and to live up to our motto “United We Stand”.

4. What is for you the key benefit of your organisation’s involvement in EPF?

Being involved with EPF allows us to better achieve our main goal, which is giving people with IBD a bigger voice. We believe that collaborating with other disease groups will give us more strength as a group and will allow us to be more effective in terms of lobbying and awareness raising. Marco Greco, our Chairman, has been on the EPF board for a number of years and is currently the EPF Treasurer. He was also elected through EPF as one of the first patient members on the European Medicine Agency’s Pharmacovigilance Risk Assessment Committee (PRAC).

5. What’s the main misconception about your disease area?

Even though Crohn´s disease and Ulcerative Colitis are not rare diseases and are on the increase, there is still very little knowledge about the disease. One main misconception is that the disease is caused by “nerves” (stress, emotions etc.) and is often confused with irritable bowel syndrome (IBS).

It´s a chronic, invisible disease with no cure so far and people with IBD often face prejudice or little understanding for their frequent or long absence from work place, education and/or social life.

The European Federation of Crohn’s & Ulcerative Colitis Associations is an umbrella organisation representing 29 national patients’ associations from 28 European countries and 3 associate members from outside Europe. EFCCA aims to work to improve life for people with IBD and give them a louder voice and higher visibility across Europe and beyond.

http://www.efcca.org/