IBD: dealing with the challenge of stigma

In Spain, it is estimated that approximately 0.8% of the population is affected by some type of these diseases. However, it is expected that, over the next 5 years, the percentage will increase to 1% of the population. We are talking about almost half a million people with inflammatory bowel disease (IBD) and affects both adults and children and adolescents.

He sustained increase in the incidence of IBD is one of the issues that have been put on the table within the framework of the World Inflammatory Bowel Disease Day which is celebrated on May 19. And the growing trend in IBD incidence is worrying health professionals due to the high impact that both Crohn’s disease and ulcerative colitis have on people’s quality of lifewith a disabling course in some cases.

“Facing inflammatory bowel disease means dealing with challenges that transcend the physical, as it also has a profound impact on the emotional and social spheres,” he points out. Marta Calvodoctor attached to the Digestive System Service of the Puerta de Hierro University Hospital – Majadahonda and member of the Board of Directors of GETECCU.

Social stigma and other challenges in IBD

Commonly diagnosed in youth, IBD triggers a constant fight against symptoms such as abdominal pain, diarrhea and fatigue. Added to this, the social stigma linked to the disease can undermine mental health and hinder the social integration of those who suffer from it. And IBD can affect mental health – anxiety and depression are more prevalent in these people – their social relationships, in the sexual sphere – it has been shown that rates of sexual dysfunction are more prevalent in this population – .

It also poses significant challenges in the academic and social life of the person with IBD. According to data from the Crohn’s and Ulcerative Colitis Confederation (ACCU Spain) and the Patient Organizations Platform (POP), 84.35% of chronic IBD patients state that their health difficulties affected their final grades and 50.42% had problems maintaining social relationships. Furthermore, 90% of students with IBD have absences, 55% of them see their productivity affected every day, 84% do not know about the diversity service and 30% of people with chronic illnesses do not finish university. . Another piece of information reveals that only 10% of people with IBD have a disability certificate to access all the resources and aid available to them.

The value of patient associations

These data are concerning and highlight the need for greater awareness and support for those living with IBD, especially in academia. In the opinion of Ana Gutiérrez Casbas, president of GETECCU and head of the Inflammatory Bowel Disease Unit of the Digestive System Service of the Dr. Balmis University General Hospital in Alicante, this reality requires “more than scientific advances and health care: greater education and public awareness are essential.” In this sense, GETECCU urges health professionals to be prepared to manage both the physical and emotional aspects of IBD, offering care that encompasses the fullness of the human experience that this disease entails.

To achieve this objective, the patient associations play a fundamental role. Not only do they provide invaluable emotional and social support, but they act as empowered voices, advocates, and catalysts for change by driving research, education, and policy advocacy that improve healthcare and patients’ quality of life. Making visible and raising awareness about the associative work is the objective of the Join #SomosUno campaign which, during the month of May 2024, ACCU Spain launched and has been a resounding success.

“At ACCU Spain, with this campaign we aim to make visible and raise awareness about IBD, value peer-to-peer help and promote associative work and its indispensable role in society. Associationism is essential not only at the national level for the vindication of rights and institutional representation, but it is essential at the local level, for its role in supporting both people with IBD and their environment, providing emotional support and generating a network. of peer support that favors coping and better management of the disease.”, he states. Lucía Expósito Legarzapresident of ACCU Spain.

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Solutions for the most pressing challenges in treatment

Although pharmacological advances are promising, we still face significant challenges. One of these challenges is to know well which patients respond better or worse to each therapy or to have objective markers of response to treatment. And there is a percentage of patients in whom there is no response to treatment or it is a partial but not complete response (primary non-response). There are also cases in which a recurrence of disease activity is experienced after a period of remission with a certain treatment. And there are patients who have a contraindication or intolerance to them.

“Although biologic drugs have been shown to be effective in controlling symptoms and inducing remission in many patients with ulcerative colitis, some may experience a decline in therapeutic response over time. It is a relatively common phenomenon, but what worries us is that it affects the patient’s quality of life, so we must look for solutions,” says the doctor. Iago Rodríguez-Lagoassistant doctor of the Digestive System Service in the Inflammatory Bowel Disease (IBD) Unit of the Galdakao Hospital.

Dr. Iago Rodríguez-Lago has led several studies that show that the combination of selective granulocyte and monocyte apheresis (GMA) along with other treatments, such as biologic drugs or small molecules, It is a safe and effective option for patients with ulcerative colitis do not respond well to these treatments. Additionally, this combination may reduce the need to increase doses of existing medications in those patients who only partially respond, helping to prevent adverse effects, in some cases serious.

“Until very recently, the main indication for GMA was corticosteroid-dependent ulcerative colitis (patients who require prolonged corticosteroids to control symptoms). But, as more therapies have become available, we have had clinical practice experiences where we saw that it could be used as a combination therapy. Thus, we have verified that this treatment with GMA adds value in terms of reducing the inflammatory load and reducing the use of corticosteroids. But we can also control the disease by preventing these patients from changing therapy so that they continue to have options in case they need to use them in the future. It is a very attractive strategy. We must not forget that this is a chronic disease for which we do not yet have a curative treatment,” says the specialist in inflammatory bowel disease.

“GMA has demonstrated its synergistic effect in combination with all biological treatments and small molecules currently available. Thus, the use of GMA in combination provides clear benefits by being able to adapt it to different situations in each of the patients,” concludes the gastroenterologist.

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