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

170 Special Solidarity Fund KCE Reports 133
Table 20: evaluation of the SSF criteria by the patient organisations
Clear criterion Unclear criterion
Rare diseases x
Rare indication
Expensive
Harming vital functions
No therapeutic alternative in the
regular health insurance system
Scientific value and effectiveness
Medical aids and treatments that
are innovative medical
techniques
Chronically ill children
Medical treatment abroad
9.11.9.1 Rare diseases
Some patient organizations made the remark that this definition is not leading to any
restriction for their members but the strict use of this definition by the SSF confirms
the limited action field of the SSF. Many diseases don’t fit into this strict definition and
for those patients no structural solution is available when they are faced with high
financial costs for a necessary treatment that is not reimbursed within the regular health
insurance coverage.
9.11.9.2 Rare indications
9.11.9.3 Expensive
Respondents perceive it as an enlargement of the strict “rare disease” definition.
For the respondents it is not clear if a minimum amount is used by the SSF and how
they calculate the cost (on an annual basis?).
The remark was made by three patient organizations that even when the separate costs
of treatments are limited, the cumulative cost can be very high based on the recurrent
characteristics of the treatment. Costs not reimbursed by SSF can appear as acceptable
(personal care products, travel costs, …) but in many cases patients that are affected by
a rare disease have less financial resources at their disposal.
The remark was made that ‘expensive’ is a very depending on the individual patient
situation. Five hundred euro can be ‘very expensive’ for one patient and for another
patient it might be easily supportable.
One patient organization supported the idea of adjustment of the level of
reimbursement by the SSF depending on the financial situation of the patient, where a
minimum reimbursement level should be guaranteed for everybody. The other patient
organizations didn’t support this idea of different reimbursement levels (depending on
the financial situation) as patients are confronted with a rare disease and they didn’t
choose for this situation. Consequently reimbursement of the medical cost needs to be
guaranteed.
Patients with limited financial resources should be encouraged to get the best treatment
that is available. Even if full reimbursement is foreseen, these patients have often less
access to optimal care. A more active approach in order to reach these patients is
required. For these people a third payer system should be established. One respondent
made the remark that taking the financial situation into account could also create a
threshold and inhibit access to care. Patients are reluctant to have their financial
situation to be put on the table.
9.11.9.4 Harming the vital functions
This criterion is not clear as during the interviews different interpretations and
questions showed up: Can we interpret vital functions as important functional
limitations or does it refer to a more life threatening situation (stopping of breathing,
cardiac arrest, ...) or does it refer to the harm of important organs (hart, lung, kidneys,
…)?