In an Editorial,
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The Lancet Neurology highlights the importance of high-quality health-care
service initiatives, their standardisation, and their transnational evolution for
people with rare diseases. The activism of affected communities themselves,
and the broader value of improved services for rare diseases, as well as more
prevalent conditions, are key aspects of these developments. For many
people with rare neurological diseases, especially those of congenital or early
onset, accompanying comorbidities—such as intellectual, autism spectrum,
and psychiatric disorders—can add to the disease burden. Comprehensive
health care for rare diseases typically requires coordinated action from many
health and social care agencies, with current European Reference Networks
providing standards and guidance.
However, these essential efforts miss a crucial consideration. Across the
European Reference Networks—and indeed in national plans, such as the UK
Rare Diseases Framework—climate change is not mentioned. Anthropogenic
climate change is an enormous worldwide challenge to human health and the
operation of health-care systems, which are themselves major greenhouse
gas emitters. But in influential publications about the effects of climate change
on health care, rare diseases do not feature.
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Yet climate change will have important, even life-threatening, consequences
for rare diseases. Recognising these concerns, rare disease charities met at
the UK Epilepsy Society in March, 2024, to discuss the effects of climate
change. Representatives of rare disease groups spoke of the concerns they
already have about the effects of climate change. Because of widespread
perceptions that health-care professionals have little influence in this area
(“what can you do about the weather, doc?”), patients, families, and carers
might not voice their concerns to health-care professionals; however, the
problems are real and are happening now.
Rare diseases commonly compromise resilience to change. For people with
ectodermal dysplasias or temperature-sensitive rare epilepsies, for example,
hot weather has always been a challenge, which is now magnified by
heatwaves—the severity and intensity of which are increasing with climate
change. Some rare neurological diseases impair thermoregulation, as can
treatments—such as antipsychotic agents or carbonic anhydrase inhibitors—
that are used in such conditions. Additionally, climate change-related adverse
weather events and unusual, unseasonal temperature fluctuation could
aggravate rare diseases, for example by disturbing sleep or disrupting therapy
supply chains. Weather-health alerts are not tailored to those with rare
diseases and could be meaningless if the necessary responses are
unfeasible.
Although rare diseases are already burdensome to the people who have
them, their care network, and health-care services, we cannot ignore the new,
superadded threats from climate change: rare disease research and
management must happen in the context of climate change. Many immediate
actions are possible to help to protect those with rare diseases, such as
informing carers of particular risks associated with a given condition and
following governmental guidance on simple measures, such as avoiding going
outdoors during the hottest hours of the day.
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Moreover, people with more prevalent conditions can learn from adaptations
that are already used by those with rare diseases as a result of their
experience with environmental challenges. Action is needed now and must
include climate considerations as part of health-care support for people with
rare diseases.
DP is the founder and CEO of the Ectodermal Dysplasia Society. AM has received funding
support from the Engineering and Physical Sciences Research Council, the Natural Environment
Research Council, and the National Institute for Health and Care Research; has consulted for the
Department for Energy Security and Net Zero; and has received honoraria from Elsevier and
Tsinghua University (Beijing, China). CP is an employee of the Epilepsy Society. AM and SMS
received institutional funding for work related to this article from the UCL Grand Challenges
Climate Crisis Special Initiative (award number 156425). SMS received funding from the
National Brain Appeal Innovation Fund.
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00333-8