Our Open Letter to PBAC & Decision Makers

Eczema Support Australia has issued an Open Letter calling on all those responsible for medicines access to list Dupixent on the PBS as a matter of urgency.

HERE IS OUR OPEN LETTER:

Open Letter to the Pharmaceutical Benefits Advisory Committee and those who make decisions about medicines access in Australia

You have never met us, but you hold great power over our lives.

You made us cry tears of joy when we learned in April that you had recommended biologic therapy Dupixent be added to the Pharmaceutical Benefits Scheme for the treatment of severe atopic dermatitis, commonly known as severe eczema.

For many of us who wrote to you to explain the impact of severe eczema, we felt that we had been listened to for the first time; we felt that our pain had been acknowledged; our lives were about to change; and we were grateful to you and optimistic for the future. But as months have passed, there is no longer joy, just tears of despair as we continue to suffer or watch family members endure emotional and physical distress.

As you consider a PBS listing of this medicine for the fourth time, we appeal for you to remember the severity of eczema and what this medicine means for those tortured by itch, not just think about dollars and cents.

We appeal to you to do everything possible to end the wait and stop the suffering. Many of us have never had a normal night’s sleep; we cannot cope in the heat of summer or the cold of winter; we get sick because we have to take immunosuppressants that damage our bodies; school, work and normal life are on hold because of this relentless condition; steroids are an ineffectual band aid that means we live from flare-up to flare-up.

Eczema Support Australia’s SOS – Save Us From Eczema campaign helped open Australia’s eyes to the realities of severe eczema, and we have been given hope by stories from those whose lives have been turned around as a result of treatment with Dupixent.

But it is simply wrong that in Australia you either need to be lucky to access Dupixent through special measures or able to pay for it on private prescription.

As you meet to decide on the future of this medicine, please also consider our future and the power you hold over our lives. We remain hopeful that you will deliver for us, as you have for other Australians in their time of need.

Signed by Eczema Support Australia

The Open Letter has been sent to the government advisory committee that meets today, as well as the Federal Health Minister Greg Hunt and Department of Health officials. The committee’s decision is not normally made public until towards the end of December. We will keep you posted on developments.