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

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