Call for national eczema strategy to end ‘treatment maze’

Eczema has a devastating and far-reaching impact, with estimates showing nearly 3 million Australians are affected by the condition.

It is shocking that Australia does not have a national strategy to end the “treatment maze” and address the complex challenges that eczema presents to patients and health care providers.

From moisturising and bleach baths to wet wrapping, topical corticosteroids and systemic treatments, eczema management is complex (here). General practitioners (GPs) play a pivotal role in managing the majority of Australians who are affected by eczema and their role must be more widely recognised and supported.

Equipping patients to self-manage eczema, while countering misinformation about eczema on social media and managing comorbid conditions such as asthma and allergies, is far from easy.

That’s why Eczema Support Australia has launched a major report, The burden of eczema in Australia — evidence for a national strategy, to quantify the burden of eczema and advocate for greater health care resources to ensure optimal care.

Informed by a multidisciplinary group with representatives from general practice, nursing, dermatology and psychology, and with a foreword from the Australasian College of Dermatologists, the report provides the evidence, and hopefully the impetus, for government to establish a National Eczema Strategy that delivers support to health care professionals and patients.

The extraordinary burden of eczema

The report reveals the extraordinary burden of eczema and makes the compelling case for governments to adopt a coordinated national approach to eczema, including providing the necessary resources to equip health care professionals to deliver care and support to people with this condition.

First and foremost, it reveals that eczema is more common than previously thought, requiring more investment from government and more support to health care professionals.

For such a common condition, the lack of registry data is a hindrance. This has prevented the full extent of eczema being understood, but our calculations indicate that eczema affects up to 2.8 million Australians, including one in three children aged six years or under, placing eczema among the top ten chronic health conditions in Australia.

Critically, the burden of eczema is not confined to the skin, but overseas studies show it has a far-reaching impact on mental health and the ability of those affected (individuals and caregivers) to work or go to school (here and here).

The psychological impact

So, although dealing with unbearable itch and protecting against skin infections are the most pressing medical priorities, the wider psychological impact of the condition should also be addressed.

Studies have also linked eczema to an increased risk of low self-esteem, depression, anxiety, mental health conditions, chronic headaches, and speech disorders, often made worse by sleep deprivation (here). Extensive studies show that adults with eczema are three times more likely to have depression, and more than one in five adults with eczema consider suicide. Yet only 2.86% of affected adults reported receiving information about psychological help from their GP. It may seem less pressing to mention that the condition restricts the ability of those affected to engage in sport or social activities, but these are daily realities of living with the condition which take a huge toll on psychological wellbeing.

Managing the pain

People affected by the condition report that eczema never sleeps, so neither do they (here). Additionally, the high level of self-management required by the condition can take an enormous toll.

Sadly, people with eczema report not being able to stand or sit due to pain. Absence from work by people with the condition ranges from ten to 20 days a year, compounded by exhaustion, worry and helplessness. For individuals with very severe disease, absenteeism averages one day a week plus another 19 hours of reduced productivity. Collectively, we estimate this represents a hit to the Australian economy of $4 billion in lost productivity each year.

Out-of-pocket costs are also substantial — up to $336 million collectively for medical visits, plus a further $1.2 billion for medications, emollients, special food and clothing to manage eczema each year. Three in four Australians affected by eczema report that they use savings, borrow money, and spend less on food and other essentials to pay for eczema management.

What is pleasing is the Australian Government’s announcement in 2021 of the medication Dupixent (dupilumab; Sanofi and Regeneron Pharmaceuticals) being listed on the Pharmaceutical Benefits Scheme (here). It is available to people over 12 years of age living with severe eczema who are not adequately controlled on topical therapy.

Clinical trials and real-world studies undertaken since these new medicines became available internationally have shown that they have the following impacts on people with moderate to severe eczema:

• rapid and persistent improvement in eczema including difficult-to-treat anatomical areas, with reduced disease severity and improved quality of life;
• significantly reduced hospitalisation and length of patient stay for both eczema and its comorbid conditions;
• improved quality of working life with reduced absenteeism and increased productivity; and
• reduced itching, improved sleep quality and reduced anxiety and depression for both patients and their caregivers.
• Improved skin barrier function with long term efficacy for moderate to severe eczema not controlled by topical corticosteroids or cyclosporine.

Although first line treatment of corticosteroids and ongoing education and management support will assist a portion of Australians with eczema, there is a real need for these treatments to be used by Australians who are diagnosed with chronic and severe atopic dermatitis that is difficult to manage without advanced therapies such as biologic agents and Janus kinase (JAK) inhibitors.

Our work with our community reveals that dupilumab and upadacitinib has been nothing short of life-changing for people who have already accessed it, allowing teenagers to return to school, social life and sporting activities and adults to return to work. The feedback we receive constantly through our Eczema Support Australia networks is that the psychological and physical burden of atopic dermatitis has been lifted from many in our community and lives have been changed for the better.

The compelling case for a national eczema strategy

Although there is no quick fix for eczema, the sheer number of Australians affected, and the enormity of the impact, necessitates government support to individuals affected and their health care professionals.

Our multidisciplinary expert group was clear that the biggest indicator that eczema will worsen or become chronic is suboptimal treatment. A nationally consistent approach to treatment along with more support to GPs, who manage most patients, would substantially improve outcomes.

The major role of GPs in this area cannot be underestimated. More support needs to be provided to GPs to diagnose eczema (especially for individuals with darker skin types), manage and refer as appropriate, and help individuals to self-manage the condition.

GPs often have time pressures for Level B consults, where eczema is often only one of a number of concerns patients want to address in one consultation. These time pressures are exacerbated by the high levels of corticosteroid phobia expressed by patients and carers. Time and patient educational resources are essential to support GPs.

Unlike other disease areas, eczema suffers from non-evidence-based and sometimes even harmful advice promoted on social media, with quick fixes touted. Widespread corticosteroid phobia means that some parents underuse steroids, leading to eczema worsening (here).

Suboptimal use of steroids has long been a concern of dermatologists. More education around appropriate steroid use would ensure their optimal use and halt in some cases the progression of the disease. Avoiding use of words such as “sparingly” will help to ensure proper use and prevent avoidable disease flares (here).

A nationwide shortage of dermatologists (just over 600 specialists currently), which is set to worsen as the workforce ages, and a shortage of nurse specialists mean patients encounter long public hospital waiting times. This can be easily rectified with more government investment in training places for dermatologists and nurse specialists.

One step closer to ending the treatment maze

In the midst of the recognised challenges, the recent announcement of two major government grants provides an opportunity to be one step closer to ending the treatment maze. The Quality Use of Medicines Alliance has been awarded funding over two years to design and administer high quality education relating to eczema management, as well as the treatment of gout, use of oral anticoagulants, and antidepressant use in older people. A second grant focused on health care professional education will provide a suite of resources on these conditions for doctors, pharmacists and nurses. Eczema Support Australia are part of the Alliance to design the eczema component of the educational program.

A golden opportunity to act

We are in a new era of eczema management, but this means that outdated perceptions around eczema need to be replaced by a gold standard of care that all patients can access, regardless of where they live, or access to specialists in their area.

Sharing the reality of living with eczema is a prerequisite to finding the political solutions to fix this under-resourcing. Many health care professionals will have patients with eczema who have considered suicide, who have been unable to work or go to school, who have reacted to hospital bedding because it is not 100% cotton, or who have received inconsistent advice on how to treat eczema — and the list goes on.

Better understanding of the pathogenesis of disease means that there is a widening gap in the way in which eczema is treated and managed, correlated to how much the individual and their care providers are equipped and resourced to treat eczema. A patchwork of services means that some strike lucky, while others struggle to cope.

More GPs with a special interest in eczema, quicker access to dermatologists, and nurse support programs that empower patients to self-manage their condition will all help alleviate the high burden of self-management. These are simple practical measures that would go a long way to transforming patient care.

We hope the medical community will embrace our report and the need for more resources to equip health care professionals to deal with eczema because high numbers of patients will continue to present with this condition.

We also welcome support from the medical community as we continue to advocate for a National Eczema Strategy because, quite simply, the distress and pain of people with severe eczema demands nothing less.

This article featured in the Medical Journal of Australia here, authored by Melanie Funk.

Melanie Funk is the CEO of Eczema Support Australia and writes on behalf of a multidisciplinary group representing general practice, nursing, dermatology and psychology: Dr Anneliese Willems (general practitioner), Dr Deryn Thompson (dermatology nurse), Dr Diana Rubel (dermatologist), Dr David Orchard (paediatric dermatologist) and Dr Ross King (psychologist).