Challenging Health Care bureaucracy “opens wounds” for patients with Butterfly Skin
We are still a long way from finding a cure, but there are currently some effective treatments available that can really improve the quality of life for people with EB. Filsuvez is the first topical medication that aids wound healing. Access to this new medication is essential for people with EB. Patients live with open wounds every day and they need painful wound care treatment that can take up to 5 hours a day.
What is the current problem?
The bureaucracy involved has delayed making the treatment available on the National Health Service. Families have been waiting for two years since the European Medicines Agency approved this treatment in June 2022 and sadly it is not looking like it will be available on the National Health service for another 3 years.
What could happen in this time?
The wounds will continue to open and in that time they may face more severe complications, like infections or carcinomas.
Their health is at risk and we need to take action now.
WE ARE ASKING FOR
- The health authorities to ensure that the timings are in place for the treatment to be offered on the National Health System.
- The process be expedited so that patients are given access to treatment as soon as possible
We will continue to exert pressure to achieve this, but we need the support of institutions, businesses, public services and the support of people like you.
If you agree...