For World IBD Day, which takes place on May 19 each year and unites people in their fight against inflammatory bowel diseases (IBD), i.e. Crohn’s disease and ulcerative colitis, we spoke with Isabella Haaf. She is the Deputy Director of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA), which also coordinates the activities for World IBD Day as well as the website worldibdday.org.
World IBD Day was created in 2010 during Digestive Disease Week in the USA. What has changed since its inception regarding its scope and perception?
When we met back then with several other major IBD associations, we decided it was important to mark a special day for Crohn’s and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease (IBD)). There was – and to some extent there still is – little public understanding of the daily struggle that people with IBD face in their lives.
Since its creation World IBD Day has helped us to raise more awareness about the disease and how it impacts on a person’s quality of life. At first, our activities were centered around the geographical areas of the founding members but every year we were approached by associations or representatives from the IBD patient community from other countries who wanted to join our efforts in raising awareness about IBD.
World IBD Day has now become an important global and visible event which brings together patient associations, patient advocates, healthcare professionals, family, friends and other stakeholders to show their solidarity with the 10 million people that are living with IBD worldwide.
The slogan given on your website is “Break the Silence”. What made you choose this slogan?
Our theme for last year’s World IBD Day 2021 was “Break the Silence”. With this motto we wanted to start a dialogue and discussions on the psychological impact of the disease:
- “How does the disease impact on you?”
- “What are the masks that you are wearing on a daily basis?”
- “How do you really feel?”
We believe that often people living with IBD do not really tell their story. They might live with pain and think it’s just part of the disease. They might feel bad about their self-image but do not talk about it. They might have good medical scores related to their disease, but their quality of life is not good.
With our “Break the Silence” we highlighted the hidden facts about what it is like to live with IBD. We are currently working on the main issues raised ruing these discussions with the aim to take these to health care providers and other stakeholders and together find solutions that will have a meaningful impact on a person’s quality of life.
What is the motto of World IBD Day 2022 and its background, and what have you planned in terms of events, webinars etc. for this year?
This year, EFCCA would like to raise awareness about the impact IBD has on elderly people. Under the motto “IBD has no age” we want to put the focus on elderly people (60 plus) and see how living with Crohn’s disease and ulcerative colitis is impacting on their quality of life and care.
Why a focus on the elderly?
This group has been consistently underrepresented even though the incidence and prevalence of IBD in older patients is rising. There are estimates that in the next decade, older patients with IBD will represent more than one-third of all patients with IBD. Yet, there is little scientific evidence to understand how IBD impacts on adverse health outcomes or quality of life in older people with IBD.
In the lead up to World IBD Day we would like to organize a campaign putting this underrepresented group under the spotlight. The campaign will consist of various elements including:
- Social media awareness raising campaign: We will be sharing material highlighting several issues on this topic from impact on quality of life, preference of treatments, participation in clinical trials and various other elements.
- Purple EFCCA Talk (Webinar) on 19 May – “IBD has no age”: We will also organize a webinar on World IBD Day on the issue of IBD in the elderly and the need for more comprehensive scientific evidence. Our invitees will include representatives from the scientific community to discuss the challenges and unmet needs of elderly patients and to discuss possible collaboration on a joint survey on this topic. Therefore, the webinar will also serve as the launch for the development of a survey with the aim to gather a wider range of information related in general on the impact of IBD on the quality of life and specifically on the age group of people 60 and above.
- Ressource material: We will compile and make available material on the subject that is already available and that can feed into the preparation of the above-mentioned survey. As usual, all our campaign material will be made available to our members and can be modified if needed to local needs and priorities.
Please tell us more about the SECURE-IBD database and its link to COVID-19. What are the outcomes and insights so far?
The SECURE-IBD is an international, pediatric and adult database to which healthcare providers worldwide were strongly encouraged to report cases of confirmed COVID-19 in their IBD patients. The overarching goal was to identify COVID-19 outcomes in IBD patients and evaluate the safety of IBD medications globally in a collaborative, ethical, transparent, and timely manner.
The organizing team included many renowned physicians specializing on IBD and was created as a direct response to the COVID-19 pandemic. EFCCA has strongly supported this initiative.
The SECURE-IBD team has recently announced the close-down of reporting to the SECURE-IBD database. The database has served a valuable purpose at a time when our IBD community needed fast answers to pressing questions.
As we move into a new phase of the pandemic with different variants, evolving vaccines and vaccination strategies, re-infections, and COVID-specific treatments, the most pressing questions have shifted away from “What are the medication and other risk factors for developing a more severe course of COVID-19 in patients with IBD?” to new questions about vaccines, immunity, testing, and treatments.
As SECURE-IBD was designed to address the initial question rather than these current questions, new studies are needed, and thus continued reporting to SECURE-IBD will not be as valuable as earlier in the pandemic.
In your opinion, what are the unmet needs of IBD patients regarding patient empowerment, new treatment modalities, and quality of life?
The main aspects of unmet needs of IBD patients mostly all relate to the patient’s quality of life and the impact the disease has on a person’s work, education, relationships, and/or emotional well-being. This means that even though a patient has achieved a “good” medical score, the additional stress and anxiety that comes along with this chronic disease is often underestimated by the treating medical team and does not translate into an improvement of the patient’s day-to-day quality of life.
EFCCA believes that a multidisciplinary approach that puts the patient at the center represents an opportunity to achieve a more harmonic combination between the quality of care and the quality of life of IBD patients.
Unfortunately, we observe that there is still a lack of timely and effective communication between the patient and the medical team about the emotional and physical burden of IBD. A better mutual understanding of the scope and pervasiveness of the disease burden is essential to improve treatment decisions and patients’ quality of life.
Many thanks for your time and for the interview.