The cost of EB

The human costs of epidermolysis bullosa are enormous and self evident in terms of the impact that the condition has on the daily life, and the quality of life, of affected individuals, their families and everyone close to them. Living with pain, the amount of time that has to be devoted every day to wound care, dressings, etc., all place a significant physical and emotional strain on all concerned. Few people meeting someone with EB would not feel that alleviating the condition was worth paying any price. Indeed, putting a price on this would probably make most of us feel uncomfortable.

As we strive to find the resources to initiate lasting and effective treatments we, perhaps not unnaturally, stress the likely costs involved in developing and providing that care. However, the other side of the balance sheet, the costs currently incurred in providing care for someone with severe EB, is an equally important part of the equation - maintaining the status quo is not without cost and, indeed, may be more expensive than future treatments. It has to be acknowledged that absolutely accurate figures do not currently exist in the UK, or anywhere else, and DebRA hopes to be able to find the funding, alongside that needed for medical research, to undertake a health economics study to provide baseline information about the current costs of looking after people with EB.

However, an intelligent estimate can be made based on what we already know and DebRA estimates that the cost in the UK is at least £25 million per annum. The technologically advanced dressings that are needed, day in and day out and in large quantities, to manage wound care are very expensive. We estimate that an average annual cost of dressings for a severely affected individual is around £50,000 and, in exceptional circumstances, dressing usage equivalent to £500,000 per annum has been recorded. The costs of personal care are always difficult to calculate exactly because costs are often hidden since much care is provided within the home by the family. However, where care is funded by statutory services, annual costs of £100 -150,000 per person have been recorded. When the costs of outpatient and inpatient care and the costs of community nursing are added, DebRA's estimate begins to look to be very conservative, even without adding the cost of social security benefits, loss of taxation and so on.

However, DebRA would never seek to argue for better treatment for people with EB on economic grounds only. We firmly believe that people with rare conditions, such as EB, have the same human right to high quality care as any other citizen and we look forward to the day when the major advances in. for example, cell therapies that we are starting to see can be translated into treatment on the ground