Speaking this afternoon in light of the HSE refusal to fund Translarna, a drug to treat Muscular Dystrophy, I called for a more patient-focused approach from the HSE when considering new drugs
Once again we have deadlock between the HSE and a major pharma company involving the price of life changing drugs. Meanwhile sufferers of muscular dystrophy and their families must face the prospect of not being able to access drugs that may greatly improve quality of life.
The case of a young Mayo sufferer of muscular dystrophy has highlighted the human consequences that arise from the failure to secure reasonably priced treatment.
Translama could extend his ability to walk by many years and his family have only recently received the news that the HSE will not be funding the drug.
It is vital that those affected by these conditions are placed at the heart of the negotiation process. This, I believe, will require a more compassionate approach by the pharmaceutical companies.
It is my belief that the Irish Government should be more cognisant of the recently passed European Parliament ‘Report on EU options for improving access to medicines’, which criticised the cost of medicines and the conduct of big pharma, stating:
‘in many cases, the prices of new medicines have increased during the past few decades to the point of being unaffordable to many European citizens and of threatening the sustainability of national health care systems.’
The same report also reinforced in the strongest possible terms that patients should have access to the healthcare and treatment options of their choice and preference and that ensuring patient access to essential medicines is one of the core objectives of the EU.
Let it not be forgotten that the Charter of Fundamental Rights of the European Union recognises the fundamental right of citizens to health and medical treatment.
Therefore, I believe there needs to be more co-operation among EU states to secure better deals on drugs such as Translarma. In the absence of any cooperation from large pharmaceutical companies with individual member states this is the only viable and sustainable option.