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31.08.2015

Success for DEBRA Spain: Free bandaging material for people with EB

After years of negotiating, the Spanish Ministry of Health and the Regional Government recognise the right of those affected by Epidermolysis bullosa to get access to essential bandaging material for free.

After numerous meetings with representatives of the Public Health System, both on a national and regional level, the Butterfly Children Charity DEBRA Spain has managed to get the Spanish Ministry of Health and the Regional Government to agree to a reimbursement scheme for and to finance the bandaging materials necessary for those living with EB throughout the whole of Spain. The agreement was formalised in a meeting of Inter-Territorial Council of the National Health System at the request of the 'Committee of benefits, insurance and financing'.

Thanks to the agreement, those affected by EB can go to their local health centre and receive all the materials essential to the treat the disease (dressings, bandages, disinfectants and creams) totally for free.

This rare disease creates extreme fragility of the skin, even the slightest touch causes the skin to blister leading to open wounds. Unfortunately there is no cure, wound care and protecting the body from further lesions are the only treatments available. In the more severe cases, up to 80% of the body can be affected with wounds, some remaining open for months and years.

Not having the appropriate materials can aggravate the wounds causing infection and new lesions, sacrificing the survival of those affected. The high financial cost of the materials has normally been the responsibility of the families adding to the burden of the condition so this historic agreement ensuring easy access and free dispensing of the essential materials has been revolutionary for all those involved!

Since the recognition of this basic right, the Butterfly Children Charity and over 1,000 affected families across Spain have been celebrating! Going forward, we will continue to work hard to achieve more of our dreams; the designation of a specialist centre, support for schooling, correct assessments for disability access, physiotherapy, rehabilitation and access to psychological care.

Minerva Quijera, DEBRA Spain (translation by Kirsty Dixon)

Boy with EB, wounded hands, playing with a wooden model of a sailing boat

© María Cano