Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

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162 Special Solidarity Fund KCE Reports 133 9.11.2 Activities of the patient organizations The objectives and activities listed below were mentioned by all the interviewed patient organizations: • Support exchange of information regarding the rare disease towards patients in close collaboration with the medical profession (diagnosis, treatment and evolution of the disease); • Support contacts between patients and their families and provision of moral support; • Foster networking between patients, their families and the medical profession. The treatment of rare diseases is often provided in university hospitals or reference centres, which still act too isolated; • Organise leisure activities for patients and their families; • Create awareness for the specific needs of patients that have rare diseases, their relatives by putting their specific situation and problems in the spotlight. All patient organizations interviewed have developed a website (www.debra-belgium.be; www.ph-vzw.be; www.boks.be; www.nema.be; www.radiorg.be) providing essential information on the rare diseases they cover. Additional information on contact persons, internal structure and scheduled activities as well as links to other parent organizations can be found. The activities of the patient’s organizations are largely based on the commitment of numerous volunteers, who are often patients themselves or relatives of patients. The deployment of paid staff, financed with own financial sources, is only feasible for the bigger organizations but remains relatively limited. Larger patient organizations, which are often umbrella organizations have several working or diagnosis groups, each focusing on a specific disease or handling a specific theme. All patient organizations indicate that it is hard to create awareness and get attention for the specific needs of patients with a rare disease. The small scale of these patient organizations and the limited number of patients they represent makes it hard to influence “policy makers”. Joining of forces is essential. Although patient organizations represent and group patients that have a specific rare disease, there is no “one to one relation” between a rare disease and the treatment that is necessary. For each of them, the medical treatment can differ substantially. As a consequence the financial costs related to their treatment also differ a lot. Each case is unique and needs to be handled this way. 9.11.3 Knowledge on the existence of the SSF The respondents became aware of the existence of the SSF via the following channels: • Information provided by the treating medical doctor. • Other patient organisation. • Information provided by employees (social workers) of recognised reference centres • From the exchange of information between their patient members leading to knowledge on the fact some of them got financial support from the SSF while others, confronted with the same medical expenses, did not. • Via a concrete case on feeding pumps, some years ago. As an individual consumer it was at that time impossible to purchase or rent this equipment. The hospital and sickness fund looked for solutions for this particular case and mentioned the SSF.
KCE Reports 133 Special Solidarity Fund 163 None of the interviewees could report us on the exact number of SSF files submitted by their patients/members on an annual basis. The patient organizations interviewed only give advice regarding SSF files when patients explicitly ask for their invention and/or support or when the patients report practical problems. Supporting SSF files is not seen as a core task. Secondly the Belgian “privacy legislation” and the “confidentiality of medical information” prevent that data from patients, submitting an SSF file can be gathered and released. As a consequence, patient organizations are unable to provide a consolidated and comprehensive overview of SSF files, the number of positive or negative decisions and the reasons behind. Depending on the nature of the rare disease the necessary medical treatment can differ substantially. • For EB (Epidermolysis Bullosa) patients, the majority of financial costs is caused by dressings that must be renewed on a daily basis (quality requirements are very high as the skin is very sensitive), needles, bandages, ointments and personal care products. Patients confronted with dystrophic EB have in general the highest financial costs. The medical doctor, initiating a SSF file is often a paediatrician as many EB patients are detected and treated in a neonatology department. The treatment plan is developed by a multi disciplinary team. • For pulmonary hypertension patients the majority of financial costs is caused by very expensive drugs (Revatio® and Tracleer® in the past, Remodulin®, Flolan®, …). SSF files are mostly submitted by class IV pulmonary hypertension patients. The medical doctor, initiating a SSF file is often a specialist in pulmonary or cardiac diseases. Reimbursement of care equipment and disposables (needles, adhesive bandages…) is currently not foreseen and may represent significant amounts. • For patients suffering from metabolic diseases, SSF applications can be related to a wide variety of necessary treatments: (orphan) drugs (off label use), feeding pumps, hart monitoring equipment, oxygen treatment. The medical doctor, initiating a SSF file is often a geneticist, biochemist, neurologist, (neuro) pediatrician, endocrinologist or medical specialist in metabolic diseases. • For patients confronted with neuromuscular diseases, SSF applications can be related to a wide variety of necessary treatments. One type of SSF reimbursement received quite recently a lot of attention as the SSF decided to suspend the reimbursement of idebenone (Friedreich’s ataxia) from March 2009 onwards. The medical doctor, initiating a SSF file is often a (paediatric) neurologist. 9.11.4 Need for safety net For the patient organizations interviewed, the SSF is an essential safety net for patients with rare diseases, covering the financial costs of treatments, which are necessary and not yet reimbursed through the regular health insurance system. The SSF is perceived as a good initiative as it is the only way to obtain some kind of reimbursement. For the patient organizations it is crucial that this financial support is provided now, but also guaranteed in the future. It is less important by which channel or institute this support is provided (via the specific SSF, via the regular health insurance system or other channels) as long as a compensation and reimbursement for these medical costs is foreseen. The question “why should we exclude a patient from receiving an essential but expensive treatment?” was raised during the interviews. Each patient has the right to receive the 'necessary'/'optimal' treatment even when financial costs are high. Accessibility from a financial viewpoint needs to be guaranteed, through the solidarity principle.
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Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

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