Belgium’s National Plan for Rare Diseases
After almost two years of hard work, the management committee¹ set up by the Minister for Social Affairs and Public Health has published its final report setting out no fewer than 42 recommendations for the adoption of a national plan for rare diseases.Entitled “A framework for integrated global political actions on health and welfare for patients suffering from rare diseases”², these recommendations clearly set out the aim of improving the quality of life of rare disease patients through medical and social actions, as well as through regulation on governance and ethics.
Those of us with experience of rare diseases need no explanation of such essential measures as establishing Centres of Reference (better diagnosis and multidisciplinary patient care), a national register (increased epidemiological knowledge of rare diseases advancing treatment and care), and measures aimed at improving the training of healthcare professionals in rare diseases³.
Hence here we focus on explaining a key recommendation from the patient’s standpoint: improving patient care by providing a global and simplified response to his or her needs.
Patient-centred care: a global response to the needs of the patient
In Belgium, the care of people living with chronic diseases is dependent on the opinion of medical advisors. “Every five years, meeting with these medical advisors is a traumatic, difficult, humiliating, inhumane experience which can destroy you psychologically. Some patients go as far as stopping their treatment a week before just to prove they really are sick”⁴.
This is the kind of situation that provided the basis for the debate on patient-centred care. Under the current system in Belgium, patients living with rare diseases are obliged to undergo periodic medical assessments, upon which access or renewal of access to treatment and medical devices depend. Aside from the humiliating and inhumane aspect of this system, described by the patient above, patient representatives on the management committee consider the system ill-suited. Rare diseases, by their nature chronic, are permanent by definition and also very often progressive, entailing changes in the needs of patients. It is not infrequent that patients gain access to treatment that meets their needs only after those needs have been surpassed and new treatment is necessary.According to Claude Sterckx from Muco Belgique and president of the Working group on patient-centred care, the recommended system would create an improvement in this situation because “patient-centred care stems from needs caused by the disease. A list of needs would be defined for each disease and the patient would progressively have right of access according to those needs, following certain criteria. This would not eliminate the notion of being assessed by a medical expert, but bridges would be built between the different care, assessment and funding systems, through the use of common tools. Patients cannot continue to be at the mercy of different departments. A global approach is vital for the patient”.
Very recently handed over to the federal minister in charge of public health, the final recommendations are currently under review by the Federal Public Service 'Public health' experts and we hope to see them translated into a national plan very soon.
¹ Working group of representatives of all interested parties, including RaDiOrg.be patient representatives
² Final report (in French): http://www.kbs-frb.be/uploadedFiles/KBS-FRB/05%29_Pictures,_documents_and_external_sites/09%29_Publications/PUB_3010_PlanBelgeMaladiesRares2011_DEF.pdf
³ For more details of the recommendations op. cit.
⁴ Anonymous patient testimony, op.cit., p.102
This article was first published in the February 2012 issue of the EURORDIS newsletter
Author: Jonathan Ventura
Translator: Helen Lea
Photo credits: © EURODIS & RaDiOrg
Belgium’s National Plan for Rare Diseases www.eurordis.org
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