Triona Farrell, who was 37 when she was diagnosed with breast cancer, said she didn’t have time to worry about being sick because she was so worried about paying her mortgage and other bills and having money for Christmas.
A self-employed marketing consultant whose daughter was just two at the time she was diagnosed, Triona said she couldn’t work during treatment so her family went from being a two income household to having just one income. On top of this they had the huge bills associated with the illness.
Triona was speaking about her own experience at the launch of a major new Irish report on the high financial toll cancer takes on patients and their families.
On average, Irish cancer patients have to spend €862 a month on costs associated with their illness and many face additional financial hardship because they are unable to work or have had to cut their working hours.
The disturbing extent of the financial burden of cancer is exposed for the first time in the report, The Real Cost of Cancer, commissioned by the Irish Cancer Society and released this week.
The illness is “a financial catastrophe” for many families, the launch event was told, with patients having to pay out hundreds of euros a month for medical care, household expenses and travel costs that are not covered even for people with medical cards or health insurance.
The report, based on a survey carried out by Millward Brown, found that patients paid an average of €303 a month in medical costs such as over-the-counter medication, GP visits and specialist dressings which can’t be claimed back.
Average extra household expenses include €226 in increased childcare costs, €140 in heating and electricity bills because patients undergoing chemotherapy often feel the cold more than others, €153 on food and drink because of time spent out of the home, and €99 on additional domestic support.
Average extra travelling costs include €166 going to and from appointments; €62 on hospital parking and €179 on other costs associated with appointments.
The extra bills come at a time when many patients and their families face a massive drop in income through the patient being forced out of work entirely or by being unable to work their normal hours. The average drop in income for those in that situation was found to be €1,400 a month.
Kathleen O’Meara, Head of Advocacy and Communications with the Irish Cancer Society said the report showed many patients were facing “financial stress, often real hardship” by having to deal with huge extra costs and a big drop in income “at a time when they are going through the severe physical, emotional and psychological impact of a very serious illness.”
She said that while three in five patients surveyed had a medical card at the time of diagnosis and more than half had private health insurance, more than 20% of those who applied for a medical card after their diagnosis were not successful.
“But even those with a medical card or private health insurance had to pay out for the many things not covered such as childcare, hospital parking and home heating and in many cases, additional over-the-counter medicines,” she said.
Requests for help from the Irish Cancer Society’s Financial Support scheme rose by nearly 30% last year and by 15% already this year.
Ms O’Meara said the Society has spent €1.2m already this year on helping patients pay for home heating, childcare, and travel, including parking.
But she said the Scheme is becoming unsustainable.
“This Scheme is funded entirely from public donations and is becoming unsustainable for the Society which also funds cancer research, information, free night nursing, as well as a whole range of activities to support cancer patients. That is why we have had to cap the amount we give to patients with the exception of the families of children with cancer,” she said.
The Society repeated its call for all cancer patients to be given a medical card, saying it was clear from the research that patients were suffering financial hardship as a result of their illness.
“If there is one thing that came through most strongly in this research, it’s that no cancer patient is spared the financial panic and distress caused by this disease, despite the range of individual circumstances. Cancer is a financial catastrophe for many families,” she said.
In a moving account of the financial struggles she faced, Triona Farrell said that the worst day of her life was not the day she got her diagnosis but the day she had to go to a social welfare officer for help.
“I went to see her and I will never forget that day. I went with no hair on my head from the treatment, ghostly looking after coming from chemotherapy and holding my baby in my arms. I had always worked and paid all my taxes and I was turned away. As a self-employed person with cancer, I was entitled to nothing,” she said.
“That was the worst day of my life. Worse than being told I was sick in a way because I was embarrassed, ashamed to be there in the first place. You don’t think you will ever be there, that it will ever happen to you.”
Triona said it was 18 months before she could gradually return to work – and even though she still suffers from fatigue, that is getting better and she is now back working full time because she needs to be.
“I feel like we, as a family, were hit by a tank and it takes a long time to get back to some type of normal. If this hadn’t happened, we would be much more financially secure,” she said.
This article originally appeared on the Ireland edition of ehospice.
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