SAGES Magazine

THE SOUTH AFRICAN GASTROENTEROLOGY REVIEW 2023 | VOLUME 21 | ISSUE 1 | 28 IBD Africa Advocacy IBD Africa has a mandate to improve the care of IBD patients through research, education and advocacy. Our advocacy project has lagged behind our other endeavours and has consisted of ad hoc interventions aimed at challenging medical aids who deny patients access to IBD treatment. We have represented patients at the Council of Medical Schemes hearings and have provided advice and support to others. Patient advocacy has evolved internationally with IBD advocacy organisations having representation on guideline committees, influencing research agendas and running parallel programs at most of the IBD international meetings. In September 2022 the first Patient Advocacy Summit was held in Cape Town. Fifteen patients attended this two-day meeting held at the Vineyard Hotel. Patients with autoimmune rheumatological and dermatological conditions were also invited. Facilitated by Lauren Pretorius, CEO of Campaigning for Cancer, this meeting deconstructed patient advocacy into easy to understand concepts. Four key advocacy issues (advocacy issue = problem + solution) were identified for action and a seed has been planted for this to grow into a much larger component of our organisation. David Epstein attended the meeting as a facilitator and many of his own preconceptions regarding important advocacy issues, such as access to IBD treatment, were in fact quite different to the issues raised by patients such as delay in diagnosis, lack of multi-disciplinary care, lack of educational material for patients after diagnosis and patient support. The support of Inba Packirisamy, Medical Manager at Abbvie was key to the success of this supporting this ground breaking meeting. IBD Africa and the Autoimmune Alliance of South Africa One of the most important issues identified at the patient Advocacy Summit was the need for collaboration between autoimmune disease organisations around the country. Autoimmune diseases, in contrast to other non-communicable conditions, such as diabetes, heart disease and cancer are largely absent from NHI and other public health policy discussions. Individually, each disease is unlikely to “gain a seat at the table”, however collectively, they represent some 2,5 million patients in South Africa. An alliance representing autoimmune conditions is a perfect vehicle for patient advocacy in private and public health sectors. Three advocacy issues will be targeted. 1. Early diagnosis of autoimmune diseases including education and standardisation of autoimmune antibody assays. Lack of standardisation in testing leads to confusion regarding diagnosis and work has been started to adopt similar strategies to the European Autoimmunity Standardisation Initiative (EASI) 2. A needs assessment of all patients in private and public healthcare who are not receiving appropriate care with a biological drug. 3. To channel all Council of Medical Schemes cases involving treatment refusal by funders through a single portal supported by an experienced legal team. The Autoimmune Alliance of SA project has been spearheaded by Catherine McCormack, founder of Arthritis Kids SA, and the official launch is planned for May 2023. IBD Africa Supports Runners at the 2022 Gun Run IBD Africa provided branded running shirts to all our supporters who participated in the annual OUTsurance 2022 Gun Run. Studies have shown the benefit of exercise for patients living with IBD. Exercise improves bone health, fatigue and has an impact on gut immunity in addition to other physical and mental well-being benefits. IBD Africa has committed itself to providing branded running shirts to any of our members participating in a sporting events. We are very fortunate that Union Swiss, producers of Bio Oil, have funded our running project. IBD Africa is proud of its achievements but none of this would have been possible without the generous support of Abbvie, Adcock, Amgen, Cipla, Equity, Ferring, Janssen, Pfizer, Takeda and Union Swiss. We also thank our colleagues for encouraging patients to participate in our online platforms and to make use of our uniquely African IBD resources. Together IBD Africa continues to grow and advocate for IBD in Africa. IBD AFRICA New IBD Cases Diagnosed in Cape Town Annually: 1955 - 2020