The Pandremix issue has lots of issues to fix as well that will probably never see the light of the day. Essentially those few hundred with Pandemrix-induced narcolepsy are now a permanently disabled minority without organized legal advocacy. The party-opposing party, that should not be opposing them, Pharmaceutical Injury Insurance Pool (LVP) has significant financial and legal resources. LVP has substantially broader access to archives and expert knowledge. The impaired functional capacity and financial position of those affected makes it difficult to advocate for their rights.
The state implemented the vaccination program and transferred responsibility to the insurance pool system with its own financial interests. The pool system determines assessment criteria and makes evaluations without external oversight. Initially, there was talk of "million-euro compensations." The government guaranteed to finance the remainder if pool funds were depleted.
Legal cases have been fought against LVP regarding time limits of confirmed cases. Compensations have remained a fraction of original expectations. Narcolepsy patients are too small a minority to influence Parliamentary politics or re-enter public discourse. This special group has been left alone to defend their rights within the pool system.
The compensations were based on Käypä Hoito Guidelines for accident injuries, which are unsuitable for narcolepsy: narcolepsy doesn't necessarily cause clear cognitive deficits despite its severity, and comparison to brain trauma is not medically possible. The drafters would probably agree if asked that it wasn't intended for this use. A person with narcolepsy can be formally capable of work, but this might consume all of their alert hours & energy, leaving nothing for actually having a life. The system may equate narcolepsy, in permanent damage, with injuries similar to a broken finger in workplace accidents, hence the permanent disability compensations are insufficient for dignified life.
The wage compensation issue is more significant. The determination basis for loss of earnings compensation is problematic as it's based on achieved education and work history, although the illness has impaired these opportunities. The same neurological illness produces different compensations depending on onset timing, as those with established careers may fare better than those who couldn't compete for university placement. This particularly affects those who became ill in childhood/youth, as it doesn't account for lost opportunities. In practice, even those from educated backgrounds with academic potential (e.g. top grades or plans for university before narcolepsy) may receive compensation based on average or low income.
Opportunity cost compensation appears unlikely. The state has not promoted reassessment of applicability of Käypä Hoito criteria.
There is insufficient monitoring of equality in compensation decisions and appeals, inadequate communication about compensations (the question whether all victims are even aware of their rights seems open), and questionable document management and decision-making transparency. LVP defines compensation terms, makes compensation decisions, and handles appeals, creating a conflict of interest as LVP has financial incentive for strict interpretation.
Permanent damage compensations are treated as earned income by Kela, requiring their use for basic living expenses, though they're meant as lifetime compensations for an incurable neurological illness.
(this is partly machine-translated from personal notes)
The state implemented the vaccination program and transferred responsibility to the insurance pool system with its own financial interests. The pool system determines assessment criteria and makes evaluations without external oversight. Initially, there was talk of "million-euro compensations." The government guaranteed to finance the remainder if pool funds were depleted.
Legal cases have been fought against LVP regarding time limits of confirmed cases. Compensations have remained a fraction of original expectations. Narcolepsy patients are too small a minority to influence Parliamentary politics or re-enter public discourse. This special group has been left alone to defend their rights within the pool system.
The compensations were based on Käypä Hoito Guidelines for accident injuries, which are unsuitable for narcolepsy: narcolepsy doesn't necessarily cause clear cognitive deficits despite its severity, and comparison to brain trauma is not medically possible. The drafters would probably agree if asked that it wasn't intended for this use. A person with narcolepsy can be formally capable of work, but this might consume all of their alert hours & energy, leaving nothing for actually having a life. The system may equate narcolepsy, in permanent damage, with injuries similar to a broken finger in workplace accidents, hence the permanent disability compensations are insufficient for dignified life.
The wage compensation issue is more significant. The determination basis for loss of earnings compensation is problematic as it's based on achieved education and work history, although the illness has impaired these opportunities. The same neurological illness produces different compensations depending on onset timing, as those with established careers may fare better than those who couldn't compete for university placement. This particularly affects those who became ill in childhood/youth, as it doesn't account for lost opportunities. In practice, even those from educated backgrounds with academic potential (e.g. top grades or plans for university before narcolepsy) may receive compensation based on average or low income.
Opportunity cost compensation appears unlikely. The state has not promoted reassessment of applicability of Käypä Hoito criteria.
There is insufficient monitoring of equality in compensation decisions and appeals, inadequate communication about compensations (the question whether all victims are even aware of their rights seems open), and questionable document management and decision-making transparency. LVP defines compensation terms, makes compensation decisions, and handles appeals, creating a conflict of interest as LVP has financial incentive for strict interpretation.
Permanent damage compensations are treated as earned income by Kela, requiring their use for basic living expenses, though they're meant as lifetime compensations for an incurable neurological illness.
(this is partly machine-translated from personal notes)