Breakthrough drug that cures eczema knocked back by PBS
It feels like ‘bugs under the skin’ 24/7, but a new drug that offers hope to sufferers of eczema has been knocked back by the government subsidy program because it is too expensive. Now a new campaign is launching to ‘Save our Skin’ and highlight the terrible plight of the condition.
NSW
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It affects more than one million Australians and in extreme cases can destroy lives, so eczema sufferers are calling on the federal government to “Save Our Skin” and give them access to a miracle drug.
Eczema, also known as atopic dermatitis, also affects one in five children and the number of cases is growing.
In extreme cases, children such as five-year-old Brock Watson require daily bleach baths and wrapping to stop infections. Likewise 10-year-old twins Matthew and Harry Funk have had to leave school due to the constant flare-ups, intolerable itching, bleeding and misery.
There is hope with a new miracle drug but, frustratingly, it remains out of reach for many because it is not listed on the Pharmaceutical Benefits Scheme.
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Dupixent, or dupilumab, is a biologic drug that blocks the immune system reaction that causes the chronic inflammatory response but it costs as much as $1600 a month. The drug has twice been knocked back for listing on the PBS due to its expense.
Albury father of two Robert Saunders luckily got the drug through a compassionate access program and said it has changed his life.
“Eczema is like having chickenpox 365 days a year,” he said.
“You’re constantly irritated. My eczema has covered me head to toe. It was everywhere, my feet, and my genitalia.
“As a baby I just ripped myself to shreds. At school age the bullying and teasing was terrible.
Severe eczema is something very different. It’s a chronic disease.”
Mr Saunders has been on Dupixent for 12 months and said for the first time in his 45 years of life he is feeling normal.
“It’s absolutely life-changing. I don’t know myself, I don’t have any eczema on my body now, I’m like a new person,” he said.
Professor Constance Katelariss, the Head of Immunology and Allergy at Campbelltown Hospital, recently told a parliamentary inquiry how remarkable the drug can be.
“I was able to have access for a dozen patients,” Prof Katelariss said.
“It’s one of the happiest things I've ever done. These people walk in and say: ‘This is life-changing’. I've had one young man who dropped out of university, couldn't hold down a job, wouldn't look at me and would hardly talk to me.
“He now comes in dressed in a suit. He's taken on a job. He's got a girlfriend for the first time in his life. His personality has blossomed. It is life-changing.”
The condition can make the lives of children miserable.
Brock Watson is only five and his life is severely compromised by eczema. At nine months of age he was hospitalised with a staph infection of the skin, which is common in sufferers as the broken skin from itching invites infections.
“The sleepless nights, the screaming … there is nothing you can do except try to soothe them,” mum Kate Watson said.
The Gold Coast mother was horrified when doctors said she would have to give her child a bleach bath.
“When they said you have to bath your children in beach bath it nearly killed me, but now we do it twice a day,” she said.
“He has to be smothered head to toe in moisturiser and steroid creams every day and he has to be wrapped at night and if he has an infection he has to go to school with wet wraps on.”
Ms Watson prays that one day dupixent will free her child from his current misery.
“Oh my god, I hope it goes on the PBS because there is nothing for children,” she said.
Melanie Funk, whose twin sons Matthew and Harry both suffer severe eczema, set up Eczema Support Australia to raise awareness and lobby for better treatment. ESA is launching the SOS campaign.
“It has been a horrendous journey of skin flare-ups and scratching and bleeding,” she said.
“We now live in a controlled environment. I home school because just being around children who had cats and dogs at home, or dust mites and pollens would cause a breakdown in their skin.”
The home videos of her boys suffering are heartbreaking and she hopes, in time, her sons will get access to dupixent.
“For Harry and Matthew it will be a game changer, as they become teens and adults it will be harder to control the flare-ups, they need better options,” Ms Funk said.
Current treatments like immunosuppressant drugs have serious side effects but, for those like Sydney schoolteacher Kobi Grabham, it is all that is on offer to control her eczema.
“Immunosuppressant drugs give me acid reflux and gave me a stomach ulcer requiring scope investigation and another drug to counter the side-effects,” she said.
“I can’t stay on them for long as they are dangerous.
“It impacts on everyday actions such as meal preparation for my family.”
The mother of two from Oran Park said her fingers had become deformed due to the severe eczema.
“I’m unable to handle certain ingredients as they sting my skin, so I wear gloves,” she said.
“It means wearing gloves to wash my hair and it means sleepless nights, discomfort and pain, feeling like you have bugs crawling under your skin.
“It means using expensive steroid ointments which thin the skin and it means battling staph infection with antibiotics several times a year.
“When this drug first came out I was really excited but to hear it had been knocked back was disappointing because it’s the first breakthrough in 30 years.”