Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?

Abstract

In the field of disability research and advocacy, the notion of 'cures' is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether 'cures for CP' is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of 'cures for CP' that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies.

Inhibitory Synaptic Influences on Developmental Motor Disorders

“…Currently, a “cure” for sCP remains a pipe dream, fuelled by desperation and thwarted by both the heterogeneous nature of the syndrome and perhaps more importantly by ethical considerations amongst the adult398 cerebral palsy community that (rightly) demand a focus in improving their quality of life (see [ 396 , 397 ] for a detailed discussion on this topic). By contrast, a resetting of some research priorities towards maximizing the efficacy and safety of existing therapies (with two major interventions directly involving inhibitory inputs to MNs) or developing uncovering new targets or pharmacological agents that improve inhibitory neurotransmission or neural circuitry within the brain and spinal cord is well past due.…”

Is cerebral palsy progressive? Why do we ask?

“…Unlike Duchenne dystrophy, the huge variability and complexity of these impairments make specific interventions challenging at a biomedical level, given our current knowledge. 4 To understand CP, to teach emerging clinicians, and especially to inform and counsel individuals with CP and their families, there is an important need for clarity regarding the concept of 'progressive'. At a biological level, the traditional idea of non-progressive referred to underlying impairments (perhaps causal) associated with CP.…”

“…In CP, there are, by definition, underlying impairments in brain function and structure, the latter often but not always identifiable. Unlike Duchenne dystrophy, the huge variability and complexity of these impairments make specific interventions challenging at a biomedical level, given our current knowledge 4 …”

Hope, hype, cures, and persons with cerebral palsy

“…Honan et al. note that claims about cures for cerebral palsy (CP) can promote unrealistic expectations, and there is disagreement whether CP should be framed as a pathological condition needing curative therapy 1 . According to the authors, ‘… false hope should be balanced with the importance of providing hope.’ They also note the importance of ‘ … maintaining hope while also being realistic.’ While their article provides little information concerning what hope actually means to persons with CP, one risk with connecting the language of hope to the rhetoric of pursuing cures is that too much emphasis is placed on optimism and the prospect of eventual cures, and insufficient consideration is given to communicating in an honest and accurate manner.…”

“…Honan et al note that claims about cures for cerebral palsy (CP) can promote unrealistic expectations, and there is disagreement whether CP should be framed as a pathological condition needing curative therapy. 1 According to the authors, '. .…”