Patients plead with HSE to fund backlog of vital drugs
Desperate patients suffering from a range of serious illnesses are calling on the HSE to fund a backlog of more than 40 expensive new drugs.
The pressure to make the drugs available to patients with cancer, respiratory illness, heart disease and other conditions is to be stepped up following this week's decision to fund the cystic fibrosis medicines Orkambi and Kalydeco from next month.
The Department of Health yesterday refused to say how much the cost of funding Orkambi - the most expensive medicine the HSE has purchased - will amount to.
It is unclear whether the money must be paid by the HSE or a special allocation from the Exchequer.
The cost implications are to be brought to Cabinet by Health Minister Simon Harris after Easter and the likelihood is that at least some of the bill will have to be found from sources outside the HSE.
The Irish Pharmaceutical Healthcare Association (IPHA), which represents branded drugs' companies, said there are at least 40 licensed drugs awaiting a reimbursement decision.
Several have been "in the process for a considerable length of time".
IPHA chief executive Oliver O'Connor insisted it entered into an agreement with the State last summer "that will see savings of over €780m delivered".
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"These savings provide the State with the headroom to invest in new drugs," Mr O'Connor said.
"The savings are accounted for by averaging the price of new drugs against 14 other EU countries, annual price reductions, rebates as well as other significant measures.
"In return for these savings, patients should be getting timely access to new drugs," he added.
He argued the process should never need to involve "political lobbying and campaigning" and "most of all, distress and anxiety for patients awaiting vital new medicines".
Patients with the lung condition Alpha-1 antitrypsin deficiency were among those to bring their case to the Dáil yesterday.
Fianna Fáil spokesman on health, Deputy Billy Kelleher, accompanied the members of the Alpha One Foundation who are asking the HSE to approve Respreeza. Their lung disorder causes severe emphysema that requires weekly augmentation therapy.
Some 17 patients are currently taking Respreeza as part of the compassionate access programme. It has already been subjected to a cost-benefit analysis and turned down. It is estimated to cost around €37m over five years.
"As things stand, access to the drug will cease at the end of April unless an agreement is reached between the manufacturer and the HSE," Deputy Kelleher said.
"Many patients who rely on Respreeza for improved quality of life are now facing a very uncertain future.
"Many feel that without this treatment they might not be alive."
Muscular Dystrophy Ireland is also asking the HSE to fund the drug Translarna - also known as Ataluren. It is the first ever treatment for Duchenne Muscular Dystrophy.
It treats children whose Duchenne Muscular Dystrophy is caused by what is called 'nonsense' mutation.
It is the first drug to address an underlying genetic cause of muscular dystrophy to receive approval. The HSE said yesterday it was not in a position to respond to questions on further reimbursement of drugs at this stage.