Dunboyne Dad devastated at HSE's refusal to fund life prolonging drug

Dunboyne Dad devastated at HSE's refusal to fund life prolonging drug

A DUNBOYNE father of two who was given a diagnosis of terminal lung cancer two years ago has been devastated by the Government's failure to fund a proven drug which increases both life expectancy and quality of life.

It has been highlighted recently that no budgetary provision was made for ‘so called’ new drugs in 2020.
Paschal Murphy (56) who never smoked in his life, is currently funding the drug Osimertinib, which costs €5,270 monthly, himself with the help of his family. He says that it is getting increasingly difficult to pay for the drug and he is concerned for patients who wouldn't be able to fund it at all.
“I just want to be able to spend a while longer with my family. Without this treatment the cancer is likely to spread to my brain and/or spine and elsewhere, within the next few months.  
“I am certain that there are several people in this country suffering from this terrible disease, who are suitable for this drug and are unaware of its existence. This is a dreadful shame!”
Paschal has been in contact with Taoiseach, Leo Varadkar in relation to this and while the Taoiseach responded to him, there hasn't been any change regarding funding.
Paschal explains that although he had always been a non-smoker, he was diagnosed with Stage Four lung cancer in February 2018.
“Two years ago, I had severe pain in my back and I was diagnosed with lung cancer which had spread to the spine. Once diagnosed, I had to undergo emergency spinal surgery followed by radiotherapy.”
“I had no warning of the cancer until diagnosis and as you can imagine, my family and I have gone through very difficult periods since then, my life has completely changed.”
Paschal was treated with one drug for a year until it stopped working and then began chemotherapy. He discovered last summer, that his cancer has a specific mutation which responds well to the drug Osimertinib, which is a far more effective and less toxic treatment than chemotherapy.
He began treatment with this drug in October 2019, paying €6,200 a month, which has now been reduced to €5,270 per month from January 2020 onwards.
“This drug is available free under the public health system in over twenty European countries and also in Northern Ireland, but unfortunately it is not approved for reimbursement in the Republic, despite it being approved for use here.
“At present, there is no cure for my type of cancer and lung cancer is the primary cause of cancer related deaths in Ireland. However, treatments are progressing and it is vital for people in my condition to have some degree of hope, as well as appropriate medication.”
“My family simply do not have the financial resources to fund this drug for much longer. The financial anxiety, caused by this expense, exacerbates the ever-present anxiety that my prognosis already engenders.”
Paschal explains that while Osimertinib offers him extended life, he knows that he is very unlikely to ever draw the state pension, avail of repeated or prolonged medical care in advanced age; or get financial support under the Fair Deal Scheme, yet he has worked and paid taxes all his life.
He says that survival time with the drug is extended and repeated studies have shown that the quality of life during this additional timescale is far superior than would otherwise exist.
“For those in my position, being able to enjoy an improved quality of life in the time remaining to us, is simply invaluable.”
“For all these reasons, I believe it is immoral that we are being treated as second class citizens and that our lives seem to be afforded such little value.”
The National Centre for Pharmaeconomics has been considering Osimertinib for reimbursement for the past two years by but have not agreed to it to date.
“I was originally told that it may be approved early in 2020 – but it now appears this will not be the case and hopefully when it is eventually approved it will be hugely beneficial to others.”
“For me personally, however, I simply do not have the time to wait. My 'window' is really, really important to my family and I – but it is extremely time dependent - and without this treatment the cancer is likely to spread within the next few months.”
“I have paid income tax and PRSI for almost 40 years (much of that tax at the higher rate) and, as an employer, I have given employment to several people over that time, including up to my recent medically enforced retirement. All I am asking for, is a sense of fairness and equality of treatment with my fellow Irish citizens and indeed with my fellow European citizens, who enjoy support from their individual States. I am therefore pleading, on behalf of myself and other lung cancer sufferers in a similar position, for free access to Osimertinib,” he said. 

While Osimertinib or Tagrisso as it is also called, has been approved for use, but not for funding, it is ironic that an unlicensed drug for cervical cancer, Pembro, which is unapproved by the European Medicines Agency (EMA) is now funded by the Irish Government.  

"The State has approved funding for Pembro for all women in this country with cervical cancer, despite the fact that this drug is not approved in the EU for cervical cancer. It is noteworthy that Professor Bryan Hennessy, Consultant Medical Oncologist, Beaumont Hospital and Clinical Lead, Cancer Trials Ireland has publicly stated that over 85 per cent of patients with cervical cancer don’t derive any benefit from Pembro," says Paschal.
"It is ironic and not missed by healthcare cancer specialists, that an unlicensed drug for cervical cancer, unapproved by the European Medicines Agency (EMA) and with limited results, is now funded, while other EMA-approved cancer drugs with much greater efficacy continues to languish unsanctioned for State reimbursement.
"Professor Bryan Hennessy has publicly stated that there is an effective drug in lung cancer called - Osimertinib - where we are the last country in the EU not to have it available free under the public health system. This despite its much higher response rates in lung cancer in comparison with Pembro would have in cervical cancer," he pointed out.


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