World IBD Day – what can a patient organization do for its members?

Interview with Anita Zacháry, President of the Association of Crohn’s Colitis, Patients in Hungary

The funding required for the operation of patient organizations is unpredictable, the staff of patient clubs is overloaded, and in many cases, all the tasks fall on the shoulders of one or a few people – therefore, better and more effective cooperation than is currently needed – says the president of the Association of Crohn’s Colitis, Patients in Hungary. Speaking of World IBD Day, we asked Anita Zacháry about the organization’s goals, the difficulties of the everyday life of IBD patients, and the patient body’s potential.

 It is difficult for an outside observer to judge the effectiveness of the work of patient organizations; what do you think the Association of Crohn’s Colitis Patients in Hungary is working and what results can they boast of? Why should a patient join you? What do you have to offer them? 

Patient organizations are working in four areas, trying to participate in shaping the regulatory environment, developing and training, participating in research and growth induced by the pharmaceutical and health industries, and simultaneously providing personal and community support to their members. The predecessor of patient organizations, the Alcoholics Anonymous Club (AA), was founded in the United States of America in 1935. Sharing experiences, mutual support, and self-help had an elemental effect on the members of the time. In the 1940s and 1950s, in the wake of this success, patient organizations consisting mainly of chronically ill people appeared in the States and Western Europe. They adopted and adapted the mutual self-help model of the AA Club to their organizations. Since the 1980s, the number of patient organizations has exploded, with the appearance of mentally disabled, disabled, diabetic, HIV patients, and organizations fighting breast cancer. Their formation was also caused by the overload and lack of time of healthcare workers, who tried to make up for the lack of care and information about the given diseases. At home, in March 1

Experience of belonging is a strong thread, the "potential" of patient organizations. Fortunately, healthcare professionals have also recognized patient experiences, as this helps and can help their work.

Anita Zacháry Nog altijd even fanatiek

One of the best examples is the European Medicines Agency (EMA), which has considered it essential to work with patients since its inception. The agency, which coordinates the work of national licensing authorities, believes that the everyday experiences of those involved with diseases and their regular treatment and vice versa are essential complements to the scientific evaluation of medicines: the information received from EMA specialists increases patients’ confidence in therapy and drug authorization, and plays a crucial role in safe and rational use of medications Promoting. The European Medicines Agency is very consciously “building” in this regard, with representatives of patient organizations being members of the organization’s management and many of its committees, from 76 in 2007 to 743 in 2015, when the EMA decided on a given topic by listening to the views of stakeholders. According to their latest annual report, in 2017, patients/consumers contacted the Agency 838 times for questions related to drug safety. Hungary is not yet here – although the National Institute of Pharmacy and Food Health has been quite active and open in this field in recent times, in Hungary, the National Patient Forum is supposed to unite the work of Hungarian NGOs. In addition, the Association of Innovative Pharmaceutical Manufacturers established the Academy of Patient Organizations in 2016; they have tried to improve the management skills of organizations. There are also excellent and helpful initiatives in the EU, the Europen Patients Forum (EUPATI) and the International Alliance of Patients Organizations (IAPO) – intense activity in this area shows that the role of citizens in healthcare is becoming more and more valuable. However, if we narrow the focus a little, we can see that everyone in Hungary has the same problems – financing, management and HR. Few volunteers are signing up, making it difficult to operate – few of us are for a lot of work. But we try to do our own for our members. The information on our website helps us to find our way; people with inflammatory bowel disease can read detailed information about us.

 Is it good that several organizations in a single therapeutic area work in parallel? Wouldn’t it be more effective if all the energy was concentrated in one organization instead of many small associations? 

Diversity is not a problem. It would be essential to have as many organizations as possible in as many settlements and cities as possible, as local issues can be raised and reflected on locally. I believe there is great power and potential in regional cooperation, and everyone loves to experience success. Success and effectiveness have an inspiring effect on the members of the organization – it is possible to build on this. In the field of inflammatory bowel diseases, apart from us, there is no such association in this group of patients. There are a few smaller organizations in the rural regions and IBD clubs in Zala County and Szeged. I understand that the Northern Region has ceased to be a previously active organization.

As an active patient organization leader, what do you think about the role and activity of the National Patient Forum? To what extent does it fulfil its umbrella organizational function? What would it take to make a real impact, a difference? 

We do not perceive the activities of the National Patient Forum, and it does not affect us. It is difficult to cooperate; most of the patient organization leaders we know feel lost in day-to-day affairs due to constant existential uncertainty. The funding required for operations is unpredictable, the staff of organizations is overwhelmed, and in many cases, all the tasks fall on the shoulders of one or a few people – better and more effective cooperation would be needed than is currently the case.

NGOs working in the health field generally find it difficult to activate patients and integrate them into the community, partly because of a negative social attitude and prejudice towards diseases. How can this be countered? 

In inflammatory bowel diseases, patients have to deal with physical symptoms and psychological factors related to the disease. Based on statistics, psychological disorders are significantly more common among people with IBD than in the general population. For example, the annual prevalence for the more severe type of depression is 2-6% in the general population, while it is 10-30% among Crohn’s patients. The exact figures for panic disorders are 3% and 8%, respectively. (1). Studies and studies demonstrate the role of social support, including patient groups, in the complex treatment of IBD patients. Social support is associated with improved physical and mental health, reduction of symptoms of illness, relief of stress and depression, and enhanced quality of life (2). It would be essential to focus on alleviating the psychological burden associated with IBD. Patient groups can play a role in this, either face-to-face or online, in a way that prioritizes the ease of anonymity. At the same time, one should not forget professional help and support from psychologists and psychiatrists. As evidenced by international data, relatively few patients with IBD are referred by gastroenterologists or general practitioners to a mental health professional, psychologist or psychiatrist- in Spain, for example, only a quarter of those affected. The fact is, however, that patients would need to receive professional help to alleviate the psychological burden associated with their pathology (3,4). Evidence-based guidelines and recommendations state that the first-line solution in treating depressive symptoms and stress associated with illness is to turn to a clinical psychologist (3). No one wants to be talked out of his circle of friends at work because of his condition. We try to show both those affected and society that we are the same people as others. We can play sports, travel, and participate in programs. It would be important that sick people do not have their lives dominated by disease, and those who are healthy are more sensitive to those with problems. We try to organize a variety of family programs where participants not only encounter the disease but can also receive helpful advice on nutrition and sports.

The impact of patient organizations on healthcare should (theoretically) be reflected at the level of the care system. How effective do you think Hungarian patient organizations are in this regard? How strong are they, and how much lobbying power are they? 

Patient organizations have or could have the opportunity to make decision-makers aware of the difficulties of living with a given disease and patients’ expectations regarding the care system. They could act as interpreters to convey the interests of the membership. If politicians were to take this seriously and exploit the potential of the patient organization, we could have a role in the preparation of decisions. We could be seen as expert groups. Unfortunately, this is just the theory, the patient organization still has a lot to do to be partners in health policy, but decision-makers also have plenty of work to do in this area. Hungary’s Association of Crohn’s Colitis Patients is currently showing only limited results, even with a lot of time and energy. In the past, in the case of Chron’s disease, it was possible to integrate the endoscopy examination of the small intestine capsule into the scope of publicly funded care with the help of dr. Ágota Kovács, chief physician, and the association’s recommendations were partially considered when preparing the professional protocol for biology therapies. In the coming time, there are some pressing issues that we would like to find a solution to. For example, we would like our members to be able to use the restrooms of catering establishments free of charge, without consuming them in restaurants, there is already an excellent example of this, this system works in England – we would solve the problem of stress on many people’s daily journeys. The tax deduction – which we already receive – is a great help. Thank you for this – but we would like to add one more request. A lot of time goes into the tests, so introducing 1-2 additional days off yearly would be a great “gift” for patients. We would also strive to get patients to the diagnosis as quickly as possible. After detecting the symptoms, it often takes 3-4 months for the patient to visit a specialist. Specialization-specific training for GPs would also be necessary – in our practical experience, this would be necessary, as well as making the work in IBD centres more efficient. We continuously report our comments to those working in the care system; we have a good relationship, and we are greatly helped by the membership of the Hungarian Gastroenterological Society led by dr. Pál Miller, dr. Eszter Schäfer, Professor Tamás Molnár and dr. Ágota Kovács, chief medical officer, is also a founding member of our organization. I know it’s wishful thinking, but our only wish is that our doctors have enough time for us to understand and understand how our body works to learn how to and can live with this disease. There would be another thing that doctors and nurses could easily accomplish: send those who seem to need help to belong somewhere!

Bibliography:

1. Anthony-Sir D. et al. Low-intensity, proven effective cognitive behavioral therapy in Crohn’s disease. Orv. Weekly 159 (9). pp. 363-369. 2018.
2. Palant A. et al. Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease. BMJ Open 2019;9:e022642. doi:10.1136/ bmjopen-2018-022642
3. Marín-Jiménez I. et al. management of the psychological impact of inflammatory bowel disease: Perspective of doctors and patients – The ENMENTE project. Inflamm Bowel Dis. 0:1-7. 2017.
4. Barreiro-de Acosta M. et al. Recommendations of the Spanish Working Group on Crohn’s Disease and Ulcerative Colitis (GETECCU) and the Association of Crohn’s Disease and Ulcerative Colitis Patients (ACCU) in the management of psychological problems in inflammatory bowel disease patients. Gastroenterol Hepatol. https://doi.org/10.1016/j.gastrohep.2017.10.003 2018