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

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164 Special Solidarity Fund KCE Reports 133 Respondents indicate that rare diseases mostly are genetically determined. As a consequence the patient has no impact on getting ill and can do nothing to avoid the disease. Patients just are confronted with the rare disease. One respondent adds that many other diseases are influenced by people’s lifestyle (smoking - lung cancer, alcohol abuse – liver diseases...) but such ‘unhealthy behavior’ is never used as a criterion for reimbursement within the regular health insurance system. 9.11.5 The SSF: meeting its objectives? On the question “to what extent does the SSF reaches its objectives” all respondents indicated that the SSF is crucial for them and even when the SSF achieves its objectives only partially, the SSF is the ultimate and only solution for many patients to have medical costs reimbursed. The respondents identified the following gaps in achieving the proposed objectives: • Not all potential SSF cases actually result in submitted SSF applications, as the SSF is not widely known among medical doctors or patients. As a consequence the SSF doesn’t reach all her potential beneficiaries. • One patient organization indicated that even medical doctors, treating rare diseases on a daily basis don’t have the reflex or automatism to consider an SSF application. • The administrative workload for medical doctors is high and submitting SSF files is not their primarily focus. If a patient is aware of the existence of the SSF, he/she can explicitly ask for the submission of a SSF file. • Patients or parents have other worries when they are confronted with the diagnosis and treatment of a rare disease. The start-up of an optimal treatment is definitely their first priority. The financial consequences related to the treatment only show up in a second stage. • The remark that patients have to find their way themselves in the multitude of existing support initiatives is not only applicable to the SSF. Respondents indicated that it is very difficult to know all the existing provisions since these are much disseminated. There is no single point of contact. Luckily various initiatives exist but finding them is a real nightmare. • Even when patients know the SSF, they can decide not to submit a SSF file for different reasons: o The cumulative criteria listed in the SSF brochure create the expectation that only very exceptional cases are approved. o Patients expect that given the name “social solidarity fund” their financial situation will be taken into account in the final SSF decision and decide therefore not to submit a SSF application (don’t want to put their financial situation on the table or expect a negative decision when their financial resources are not low) o Some patients don’t submit a SSF application as they judge for themselves they are able to carry the financial cost of the treatment. • Respondents indicate that a “grey zone” exists regarding which treatments have a potential chance of being reimbursed by the SSF. The following examples were given: reimbursement of essential physiotherapy more than twice / day, vitamins, the need for another drug than the one that is registered as the orphan drug related to the patients’ individual indication or disease. • Knowledge on the SSF at local sickness level differs substantially. It is not realistic to expect that all staff and advisory physicians of the local sickness funds know the existence and functioning of the SSF in detail and have medical knowledge on all rare diseases and their treatments. • The term SSF “special solidarity fund” doesn’t cover what the term suggests as the SSF doesn’t intervene in all cases where there is no reimbursement in the regulatory health insurance system. Solidarity within
KCE Reports 133 Special Solidarity Fund 165 the SSF is restricted and limited to very specific financial costs for very specific indications and pathologies, for which a whole set of criteria, must be met. The SSF covers only a specific part of problematic situations. • Patients are sometimes victims of conflicts of interest between the NIHDI and the pharmaceutical or medical device companies. The fact there is no agreement on the price of a drug or a drug is not registered in Belgium, or is not registered for a specific indication (off label use) may not have consequences for the individual patient, for whom the treatment is essential. The main reasons why the SSF doesn’t reach its objectives mentioned were: • The unfamiliarity with the SSF, as well within the group of medical doctors as in the group of patients affected by a rare disease. • Lack of knowledge regarding the treatments and costs that could be reimbursed via the SSF. • The administrative workload for the medical doctors. • The highly defined and very limited field of action of the SSF. 9.11.6 Alternatives for the SSF On the question “What other options do you see to respond to this type of need?” the following answers were provided. • Private health insurances; • Respondents indicate that there are substantial differences between insurance companies – adhering is often impossible when the patient has a rare disease already - rare diseases are sometimes excluded - a maximum amount of costs is foreseen and reimbursement is limited to hospitalization; • Public centers for social welfare (OCMW / CPAS); • Additional hospitalization insurance offered by the sickness funds; • VAPH: Flemish Agency for Persons with Disabilities (Bijzondere Bijstandcommissie/special assistance committee/BBC) for medical aids. The names BBC (bijzondere bijstand commissie) and BSF (bijzonder solidariteitsfonds) are confusing for patients, sometimes thinking these are the same initiatives. • The social funds of the hospitals or the sickness funds on very exceptional circumstances • The pharmaceutical companies (providing the medication for free to patients) All respondents indicated that none of the channels mentioned are a valid alternative to the SSF as they are restricted to the hospitalization phase, limited in action field (medical aids), have limited financial resources and/or only applicable in exceptional circumstances.
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Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

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