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

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168 Special Solidarity Fund KCE Reports 133 9.11.8.2 The centralized procedure The text below is based on the interviews with 3 patient organizations (PH pulmonary hypertension, BOKS metabolic diseases and NEMA neuromuscular diseases): • SSF files are mostly initiated by the treating medical doctor. In Belgium, there are 8 recognised reference centres for inherited metabolic disorders and 6 recognised reference centres for neuromuscular diseases. For pulmonary hypertension the majority of patients are treated in 3 hospitals. The social services of the hospitals, the social services of the sickness funds or the patients themselves if they are aware of the existence of the SSF can also play an active role in this initiation phase. o As indicated before the remark was made that even medical doctors treating rare diseases on a daily basis don’t have the automatism to initiate a SSF application. o The administrative workload of a SSF file for the treating medical doctor was reported as heavy. • Two patients organisations know that SSF files are submitted to the local sickness funds (advisory physician), afterwards transferred to the national level (medical director) and in a third phase submitted to the SSF. One patient organisation is not aware of these intermediate steps o It is impossible and unrealistic to expect from the employees and/or advisory physicians of the local sickness funds, to have an in depth knowledge on the treatment of all rare diseases, on the legal context and on the functioning of the SSF. As a consequence they can not assure optimal and up-to-date advice to their members, who are potential beneficiaries of the SSF. Centralization of knowledge within the sickness funds could offer a solution for this problem. o The added value of the local sickness funds is questioned. Respondents indicate that local sickness funds provide support in completing the administrative formalities and they check if the SSF file is complete. o The 3 step procedure is complex and patient organizations indicate that the majority of their members / patients don’t know these different stages. This statement is further supported by the finding that the majority of their members even don’t know the SSF as such. o Patients are not aware of the complex administrative procedure and it should not be their concern. When the diagnosis of a rare disease is made, the patient or parents start a hellish quest for support ranging from psychological support, finding a suitable school to the search for medical devices. All these aspects seem evident or negligible when seen isolated, but the quest for all aspects together is time consuming, complex and frustrating. Many supporting initiatives exist but the gateway to reach them seems to be closed. The creation of a single point of contact, where knowledge about all existing support initiatives, including the SSF, is centralized would mean a world of difference for the patients and their parents. According to the respondents the following institutions could play an active role in creating awareness for this problem and support the creation of the suggested initiative: Radiorg.be as the national umbrella patient organization for rare diseases, the 3 regional umbrella patients organizations (Flemish patient platform/Vlaams patiënten platform, LUSS Walloon patient organization/Ligue des usagers des services de Sante”, “Patientenrat & treff” patient organization in the German speaking region) and organizations such as “Kind en Gezin” as rare diseases are often detected at a young age. • The SSF is not very well known amongst patients
KCE Reports 133 Special Solidarity Fund 169 o It is not clear who the deciding authority is at SSF level. For one patient organization the difference between the SSF and the commission on orphan drugs is not clear. o Patients don’t know the SSF and are certainly not aware the SSF is a part of the NIHDI. • The percentage of SSF applications that are completely rejected is relatively low (no precise indication of a %). If so, it puts the patient in a very problematic situation. • The patient organisations recognise and appreciate the role the SSF plays in detecting expensive medical treatments, drugs or medical devices not covered within the regular health insurance system and the actions undertaken to include some of these into the regular health insurance coverage. Patient organisations gave examples of previous 9.11.9 reimbursements by the SSF, that are now included in the regular health insurance system. • The throughput time of SSF files has decreased over the years but can still be significant from a patient perspective. • Patients are informed about the outcome of their SSF application, but often this information is unclear and in some cases outdated. If medication is essential for a patient, the treatment needs to start urgently. As a consequence medication has been administered before a final SSF decision is taken. For very expensive drugs an emergency procedure must be possible to avoid patients being confronted with a major financial risk. • The SSF is perceived as a very isolated department since no direct contact between the SSF and the patients is allowed. One respondent stated that it’s strange that such complex and individual SSF cases are completely evaluated on paper. Patients are never asked to appear in person and a patient can never explain or illustrate his/her SSF application from a patient perspective. Knowledge and appreciation of the SSF criteria The criteria, necessary for approval of SSF cases that were reported spontaneously during the 4 interviews (without any support tool – grid) are listed below: • Rare disease, expensive remarks by all respondents that the definition of “expensive” is not known, life threatening situation, complex, beyond the experimental phase, added value must be proved, prescribed by a medical doctor specialist, not reimbursement via the regular health insurance system • As shown above, respondents reported a limited number of criteria without the help of the criteria grid, often in more general terms. When asked for the definition of each criterion, respondents said they were not aware of the exact definition, used by the SSF to decide on the SSF cases. Only for the criterion rare disease, two respondents immediately referred to the proportion of 5 persons affected on a population of 100.000 persons. The respondents were asked to formulate their appreciation of each criterion in terms of relevance (answering to a real need), clearness and formulation. This time the interviewer named the different criteria or showed a grid in which the criteria were listed. The respondents did mostly not understand the meaning of the criteria and therefore did not answer the notions of relevance and formulation. Patient organizations hardly know the criteria and perceive them as medical issues that have to be judged by the physician judge the cases according to the criteria.
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