Moderate-to-severe atopic dermatitis (AD) is not just an itch and may not just go away on its own.
It is neither a small rash nor just some dry skin, and it doesn’t only impact children.
The fact of the matter is that one in three pediatric AD patients have moderate-to-severe disease. Not all will outgrow their AD; those that don’t face a lifetime of disruptive symptoms. A lifetime of intense itching, redness, inflammation and discomfort can have a profound impact on an individual’s physical and emotional well-being.
Misunderstandings about the complex nature of the condition means that AD is often managed with less-than-optimal outcomes. However, too many people require more than just topical and anti-inflammatory treatment. In fact, millions who live with moderate-to-severe AD without the necessary treatment experience lifelong implications, impacting life events such as education, career, marriage and personal family decisions.
Furthermore, AD has implications beyond the individuals living with it. Being a caregiver for someone living with AD can have substantial mental, physical and financial consequences. For example, research has shown that parents can spend approximately 22 hours a week applying any treatment they can find for their children – including moisturizers, wet wraps or bleach baths – to alleviate painful, chronic, debilitating flare-ups of inflamed, raw and bleeding skin.
Ensuring children with AD and their caregivers have appropriate access to effective treatment can be vital to address the frustrating, inefficient and recurring cycle of time-consuming visits to general practitioners.
Ensuring children with AD and their caregivers have appropriate access to effective treatment can be vital to address the frustrating, inefficient and recurring cycle of time-consuming visits to general practitioners to try and manage symptoms and stop chronic flare-ups. Importantly, this approach would not only improve health outcomes, but it could also positively impact AD patients and their families.
Impact of AD is beyond the visible and the individual
While it is easy to think of AD as a skin disease, the lifetime impact of the condition on a person is more than what people see.
While it is easy to think of AD as a skin disease, the lifetime impact of the condition on a person is more than what people see.
For instance, missing school and social activities can become a normal occurrence for children with severe AD. Their daily routine is frequently overshadowed by appointments, treatments and flare-ups, as well as the emotional burden of shame and low self-confidence about their physical appearance. This burden results in some children struggling to keep up with their peers, which has a bearing on their quality of life and their educational and social development. A study has shown that 12.5% of children under three who have severe AD experience developmental delays in motor skills, communication, relationships and play.
An often-overlooked aspect of living with AD is that the condition can lead to significant sleep disturbances, often caused by persistent itching.
“Sleep is a huge factor that’s affected by AD and lack of sleep affects every aspect of your life. It doesn’t allow you to concentrate in school if you’re sleep deprived [and] you’re definitely more moody,” explained Dr. Patrick Finklea, a pediatrician and parent of a child living with AD.
As children get older, AD-associated issues broaden the gap with their peers, leading to increased social difficulties, isolation and a significant mental health impact. According to a survey from the National Eczema Association, 20% of parents say that their child is bullied at school because of their eczema (including AD, the most common form of the condition) and 75% highlight that their child experienced lower self-esteem as a result.
In addition to the physical and emotional strain on caregivers, the financial burden of attempting to alleviate a child’s chronic symptoms, arising from lifestyle adjustments, lost wages and out-of-pocket costs, are substantial. Caregivers may also have to consider a career change or give up work altogether due to the demands of looking after someone with AD.
Act now to ensure a brighter future
It is vital to stop thinking about AD as a childhood issue – one that will be outgrown. Instead, it needs to be prioritized as a serious lifelong condition and recognized as a chronic and debilitating disease with lasting and profound impacts.
It is vital to stop thinking about AD as a childhood issue – one that will be outgrown. Instead, it needs to be prioritized as a serious lifelong condition and recognized as a chronic and debilitating disease with lasting and profound impacts; a disease that not only affects the individual but also the social ecosystem.
In Europe alone, the total direct cost to society associated with moderate-to-severe AD is estimated at €30B annually.
Given the substantial individual and societal costs of AD, decision-makers need to urgently implement an effective response to meet the needs of patients. In Europe alone, the total direct cost to society associated with moderate-to-severe AD is estimated at €30B annually. Therefore, prioritizing investment in early and effective AD interventions – including timely access to specialists and effective treatments – can have significant impacts on the overall cost and outcomes of disease management.
As MEP Sirpa Pietikäinen (EPP, Finland) said at a POLITICO Spotlight debate last year, “Countries always reimburse the cheapest drug on the market, then the next cheapest, then the next one. This ladder approach is wasting money and enabling the condition of the patient to deteriorate so much they can’t recuperate.”
We call on decision makers to implement evidence-based policies to improve access to care and prioritize timely intervention to manage AD – all with the aim to advance the health and well-being of individuals and contribute to the long-term economic and social prosperity of society.
MAT-GLB-2305184 V1.0 | October 2023