Experts Urge National Strategy for Neglected Diseases
An extremely common yet often dismissed condition that causes undue pain and distress to millions of Australians and costs the economy $4 billion a year is the focus of a new report calling for a National Strategy to prevent Australians being lost in a treatment maze.
Launched by Eczema Support Australia, with input from a multidisciplinary group representing nurses, psychologists and GPs, and supported by the Australasian College of Dermatologists, ‘The Burden of Eczema – Evidence for a National Strategy’ reveals that up to three million Australians – including one in three children aged 6 years or younger – are afflicted by eczema which causes severe pain, distress and sleep disruption, yet many are undertreated due to a nationwide shortage of dermatologists and lack of training for general practitioners.
Eczema Support Australia Managing Director, Melanie Funk said that the report “should act as an SOS call to Government to establish a National Eczema Strategy to urgently address the suboptimal treatment of eczema.”
The major report reveals that adults with eczema are three times more likely to suffer depression than those without the condition, and more than one-in-five adults with eczema consider suicide, yet only 3% of impacted adults reported receiving information about psychological help from their GP.
Each year, Australians incur up to $336 million out-of-pocket costs for medical visits, plus a further $1.2 billion for medications, emollients, special food and clothing to manage eczema.
In a recent survey, three quarters of Australians with eczema said their family was impacted financially by the condition, with many saying they use savings, borrow money, and spend less on food and other essentials to pay for eczema management.
“As a mum with twin boys diagnosed with eczema fourteen years ago, it was shocking to me how little support and patient education there was, made all the worse because eczema never sleeps – so neither does anyone dealing with eczema,” said Ms Funk who set up Eczema Support Australia to provide connection and understanding to other Australians impacted by the condition.
“Fast forward fourteen years and nothing has changed. We hear the same cry for help repeatedly from those contacting us, who are driven to desperation by pain and exhaustion. Many do not have timely access to specialists, and many suffer from a huge variation in care across Australia,” Ms Funk explained.
“For a condition that is so common and requires such a high level of self-management, it is truly shocking there isn’t more support and education, and so many are lost in a treatment maze,” said Ms Funk.
“We desperately need a National Eczema Strategy in Australia to improve the lives of those struggling with the consequences of eczema which include sleep deprivation, anxiety, depression, headaches, and thousands of dollars of out-of-pocket costs from managing the condition.”
Eczema Support Australia has written to the Federal Health Minister and Department of Health and Aged Care to share the report’s findings and to seek their support for establishing a National Eczema Strategy. The organisation has also formalised its call via a petition to the House of Representatives. The e-petition closes on 6 October 2023.
The Australasian College of Dermatologists, which authored the report’s foreword, endorsed the call for a National Eczema Strategy and added their support to “bringing eczema out of the shadows and showing that Australia can, and must, do better”.
Dr Adriene Lee, President of the Australasian College of Dermatologists said, “A coordinated response will go a long way to ensuring all Australians with this condition have optimal and equitable access to treatment and care, which is why the College has no hesitation in supporting this report – and the evidence for a National Eczema Strategy.
“The widespread underuse of topical corticosteroids due to ‘steroid phobia’ has long been a concern of the College but without a coordinated effort to change these perceptions using evidence-based information, Australians will continue to experience avoidable and unnecessary severe disease flares.
“As well as education and awareness raising for general practice and pharmacy, it is also critical to ensure access to specialist care by addressing the dermatology workforce shortage through federal and state investment in dermatology services and training.” she said.
The report includes a 10-point list for a National Eczema Strategy to address, starting with standardising the care of Australians with eczema so those impacted receive the right medicine and services, including psychological support, at the right time, regardless of where they live.
Other areas to address include countering ‘steroid phobia’ to prevent the underuse of corticosteroid therapy which leads to unnecessary eczema flare-ups; ensuring all Australians with eczema benefit from timely access to treatment; increasing health literacy for those affected; funding patient support services; bolstering dermatology training in general practice; addressing a nationwide shortage of dermatologists; and establishing an eczema registry.