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

166 Special Solidarity Fund KCE Reports 133
9.11.7 The interventions domains of the SSF
9.11.7.1 Enlargement of the SSF intervention domains
On the question “Which other elements should to your opinion be covered by the
SSF?” respondents reported the following recommendations:
• Reimbursement of personal care equipment and disposables (needles,
adhesive bandages, soap, disinfectant, catheters used for injection of
medication via pumps) is currently not foreseen and can represent
significant expenses.
• Technical aids (aspirator, hart monitoring equipment) are necessary for a
very limited number of our patients (exceptions within the broader group
of our rare disease) but no structural support (reimbursement) is
foreseen.
• Side effects of drugs can have positive impact for certain metabolic
diseases (off label use).
• The terms “scientifically proven” and “prescribed by the treating medical
doctor for an individual patient as the most optimal treatment” are two
different aspects. For rare diseases, it is sometimes impossible or very
complex to carry out scientific studies. The patient organisations draw
attention to the fact that the number of patients affected by a rare disease
is by definition limited (too small sample for scientific studies) and
secondly that the treating medical doctor often don’t want to take the
risk that a patient would not receive the required medication (division of
patients into 2 groups with one group receiving the administered
medication and the other group receiving a placebo). The SSF should rely
more on the expertise of the treating medical doctor, who is an expert.
9.11.7.2 Limitation of the SSF intervention domains
On the question “Which elements should, to your opinion, be excluded from the
current SSF system?” none of respondents judged the current intervention domains of
the SSF as redundant. On the contrary, patient organizations would welcome the
enlargement of current intervention domains (see recommendations above).
Besides the intervention domains of the SSF, patient organizations would welcome
solutions for all medical treatments not covered within the regular health insurance
system.
9.11.8 Experience with the SSF / knowledge of the SSF procedure
Two procedures exist within the SSF. The decentralized procedure (complete
delegation of SSF files to the sickness funds) is applicable for EB patients represented by
Debra Belgium. The centralized procedure (submission of SSF files to the sickness funds
first at local level, afterwards at national level and finally towards the SSF) is applicable
for the 3 other patient organizations.
9.11.8.1 The decentralized procedure
The text below is based on the interview with Debra Belgium (2 interviewees). They
described their view on the different steps and parties involved in the submission of a
SSF application.
For SSF files related to Epidermolysis Bullosa (EB) patients, a specific procedure has
been established. All SSF files related to EB patients, are delegated directly from the SSF
to the sickness funds, meaning that SSF files are submitted, treated decentralized,
outside the SSF. For these cases a final decision is taken, not by the SSF, but by the
medical advisor of the local sickness fund. This decentralized procedure came into force
in 2001. The main objective was to shorten the throughput time of an application. The
College of medical directors had the task to further stipulate and decide which rare
diseases and treatments could fall under this specific procedure.