Skin foundation appeals for access to eczema drug
RTÉ radio presenter Paul Herriott does not look like someone who has struggled to bring his eczema under control.
“I don't look like a victim because I have quite sallow skin and it is not present on my face,” said Mr Herriott, a patient advocate for the Irish Skin Foundation
Mr Herriott, originally from Belfast, who joined RTÉ's Lyric FM from the BBC as one of the station's founder presenters in 1999, has been given compassionate access to a life-changing drug.
The ISF has called on the HSE to reimburse the drug - dupilumab - so that hundreds of people living with severe atopic eczema throughout Ireland can use it.
However, the health authority does not support reimbursement of the drug because there is “a paucity” of long term efficacy evidence available.
The HSE's drugs group has also noted the limitations of the cost-effectiveness data and the significant budget impact despite the proposed commercial offer.
The ISF believes patients who have exhausted all other treatment options will benefit from the drug.
"Patients living with severe eczema are desperate for access to a treatment that can be truly life-changing for many," he said.
"We're asking for fair access to new medicines, based on value for money, transparency, effectiveness and sustainability, and we went to see a future for people with eczema without having to live with painful, broken and bleeding skin."
The new treatment has been available to patients elsewhere in Europe for over two years.
Eczema, that causes a dry, red, itchy rash, affects one-in-five children and one-in-ten adults.
Mr Herriott has lived with the skin condition since he was a child and has now run out of treatment options.
“Over many years, I have seen great changes in the medical management of my eczema from my earliest experiences with consultants in the North, to my various courses of treatment, wet wrapping, phototherapy, and more," he said.
“While the care I have received has been incredible and has allowed me to lead an essentially fully active life, the burden of management has been utterly exhausting, and I eventually reached the limits of current treatments.
“This is the place where hundreds of patients living with severe and painful eczema now find themselves.
“I urge HSE management to allow people with eczema their fair share of access to new medications and a future without the ongoing ordeal and guesswork of daily management.”
His eczema did not get out of control until he was into his 40s and his “big trigger”, like a lot of people with the condition, was a severe drop in temperature.
Mr Herriott believes that dupilumab, which is administered by injection every two weeks, will be a life-changer.
It is a targeted therapy believed to work by blocking the actions of two key proteins involved in the inflammatory response.
“I cannot imagine what it must be like to get up in the morning and not have to tend to my skin or put on an extra layer of clothing to keep the body temperature consistent.
“And I cannot imagine what it is not to have lesions on my skin or to know that I am hiding something from other people.
Consultant dermatologist, Prof Alan Irvine, said those living with severe eczema have a very reduced quality of life. Their sleep is severely affected and itch and discomfort are constant companions.
"Irish patients with severe eczema have been waiting for approval for dupilumab for two years since the UK's NHS made this often life-transforming drug available in the North," he points out.
"Many have been living their lives in a cruel limbo awaiting sign-off for this medicine."
