How new treatments can redefine social care

Balancing safety and independence

For many years, the question of how best to care for adults with Prader-Willi Syndrome (PWS) has divided opinion. Families and clinicians have often favoured specialist residential care, believing it offers the most reliable path to stability, safety, and good health. Public sector commissioners, with the understandable, and very real, pressure of limited resources and a belief in promoting independence, have tended to argue for supported living in the community.

At the heart of this debate lies one challenging feature of PWS – hyperphagia.

This isn’t simply a fondness for food; it is a relentless and consuming drive to eat, frequently extending beyond normal hunger and sometimes even beyond food itself. The consequences for health and wellbeing are obvious enough — obesity, diabetes, cardiovascular problems — but hyperphagia also defines the entire structure of care and support.

The tyranny of hunger

It is difficult to overstate how profoundly hyperphagia shapes the lives of those with PWS and those who care for them. Kitchens must be locked. Fridges secured. Staff must monitor constantly, not because they wish to limit freedom, but because the alternative can be harmful. Days revolve around meal planning, negotiation, supervision and, often, confrontation. The central task of care becomes not the development of personal potential, but the constant management of risk.

This is not the vision of fulfilling, independent life that any family would want for ther children. Yet until now, there has been little alternative.

The arrival of Vykat XR

Vykat XR — or carbetocin extended release — offers, for the first time, the prospect of directly addressing the problems of hyperphagia at its source. Instead of building elaborate routines and restrictions to manage an overwhelming appetite, this treatment aims to dampen the appetite itself. By targeting the brain’s oxytocin pathways involved in satiety, Vykat XR has begun to show, in clinical trials, meaningful reductions in hyperphagic behaviours.

Early results are encouraging. Patients receiving Vykat XR report fewer intrusive thoughts about food. Families report less conflict and anxiety. Caregivers note a reduction in obsessive food-seeking and a calming of the emotional turbulence that often accompanies extreme hunger.

A shift in the balance of care

Should these results continue to hold true — and should regulators approve wider use — the implications for living and care models could be profound. The case for highly restrictive, intensive residential care might weaken for some individuals. The prospect of supported living — with greater independence, flexibility, and dignity — becomes far more viable if individuals have more agency over their decisions and behaviours.

This is not to suggest that Vykat XR is a cure for PWS. It’s not. PWS encompasses a complex range of cognitive, behavioural and physical challenges. Nor will every person respond in the same way. But if one can remove the tyranny of hunger, much else becomes possible.

The question of affordability

There remains, however, another major obstacle. At present, the cost of Vykat XR is high — prohibitively so for widespread use in publicly funded health and care systems. For this treatment to become a broadly available option, prices will need to fall substantially. Until then, it risks being accessible only to a small number of privately funded families or research participants. If the benefits of Vykat XR are to be realised at scale, commercial pricing models, healthcare budgets and ethical questions around access will need to be navigated.

The opportunity – and the responsibility – ahead

Policymakers, clinicians, providers and families may be able to adjust their assumptions and expectations. The question will no longer be whether supported living is safe, but for whom, and under what conditions. New models of care could emerge that blend the flexibility of supported living with specialised expertise more traditionally associated with residential settings.

Medical advances often arrive slowly and unevenly. But Vykat XR may, in time, come to represent a pivotal moment: the point at which the care and supprt for people with Prader-Willi Syndrome moved from managing crisis to fostering potential.

In the end, that is the purpose of care — not simply to contain risk, but to create space for lives fully lived.