A LIMERICK woman fighting cancer – who has had over 60 surgeries, both kidneys, womb and bladder removed and is on dialysis – has been turned down for the third time for a medical card.
The 41-year-old spoke to the Limerick Leader as she wanted her story told but wished to remain anonymous as she is worried about how it would affect her business.
As she is on dialysis three times a week she knows of patients who have had a transplant that are halving the dosage of their anti-rejection drugs because they can’t afford to pay for them.
“As a result, they are rejecting kidneys that they are after getting. That’s just criminal, to go through years of dialysis, get on a transplant list, get a kidney and not be able to afford the medication...” said the lady, who has been on a transplant list. She first started feeling sick in 2001 and after a number of misdiagnoses bladder cancer was diagnosed.
“Eventually I got an ultrasound done on my bladder which showed a massive tumour. It’s very unusual, everyone said you should be a heavy smoker, you should be a middle-aged man, it’s very unusual to hear it in a young woman in particular. That’s probably what threw the doctors off as well.”
She underwent 13 years of cancer treatment with one major surgery to remove the tumour then laser surgery every three months. “I had 60-something surgeries in total and chemo. I never applied for a medical card.
“I have never applied for the dole. I have never asked for help from anybody. I kept the business running the whole way through, employing people the whole way through. I never stopped working because it’s easier to be busy.”
The tumour didn’t respond to any of the chemotherapy that normally works, hence the laser surgery for the returning tumour cells.
“I suppose for the majority of it, for the first eight or nine years, it would be very, very painful after the surgery. You’d be going to the loo every 30 seconds because you couldn’t have anything in the bladder, it would drive you ballistic, with irritation and burning and pain.”
Eventually, it spread up to the right kidney and doctors decided that the safest thing to do was to remove it.
“Then we had a huge hit, it showed up in the left side, towards the left kidney. So I had another, I suppose maybe five years, treating the left side, trying to keep it under control until eventually in 2012 the doctor said it had changed and was now getting very aggressive.
“He couldn’t guarantee that he could control it anymore. So in 2012 it was a case of making the big decision to have the kidney and the bladder and hysterectomy all at the same time.”
Since then she has been on dialysis three times a week but managed to combine it with keeping a business running, being a wife and mother.
Ironically she never even applied for a medical card.
“It came in the post out of the blue, like a gift from the gods shortly after I had the big operation in Beaumont in 2012. It made a huge difference. For the first seven or eight years I was able to stay working fairly normally, I’d miss the odd fortnight here and there after a surgery, but I would be kind of stubborn and I wouldn’t stay at home long, I’d go back to work. It’s what I do.
“Before I had the bladder out I would have been in pretty much constant pain, I didn’t work as hard then, the business hasn’t been as well monitored the last couple of years and then since 2012, obviously, I was out for a good six months after that surgery.
“My husband who was a PAYE worker for 19 years and self-employed for two years is now on the dole. I am paying people to do my job and then I’m paying myself to take a wage to feed the family. So to get a medical card out of the blue like that was a huge help, it’s €140 a month - medication plus any GP visits.”
She had the medical card about six months, then again out of the blue, she got a letter saying they had decided that she was “no longer eligible”.
“There was no explanation, it was a discretionary medical card and we have decided (to remove the card). We have applied three times now, we have got doctors’ letters and surgeons’ letters.
“The Irish Kidney Association, they are brilliant, wrote a letter for us saying: ‘Listen, she’s going to be on medication for the rest of her life, if she does get a transplant she’s going to still need medication for anti-rejection drugs, is there anything you can do?’.
“They said no. Financially I don’t qualify because I take €400 a week out of the business, my husband has whatever he has on the dole, a hundred odd euro.
“I’ve never taken a penny from the State, I pay my taxes every year - it was hard going this year.
When you really need somebody to give you a hand, it’s an extra slap in the face you don’t need when you are already going through hell. It’s another thing that makes it harder and not only to be refused but that general sense of ‘Jesus nobody gives a s***’. It just makes it harder than it needs to be, to be honest.”
She has just been turned down for a medical card for the third time. Now her medication will have to go on the credit card, building a debt and she will have to work harder. Asked if it is a caring society?
“No, absolutely not. It’s survival of the fittest. Look after yourself because nobody else will, no question.”
Her doctor has taken up her case and said it was “inhumane”.
“It really beggars belief how a ‘coper’ like her can be passed over. I suspect the problem is that she is a self employed person as she has been rejected on gross earnings - not a whit of thought taken to psychological effects of living and working with cancer.
“It has certainly impacted her ability to use primary care services. Surely, one phone call from the centralised GMS application office to me would have been sufficient to clarify her status of need. Instead, reams of bureaucracy and stress for an already sick lady - it’s inhumane,” said the doctor.
Cllr Shane Clifford, has been looking into the case and asks what kind of society are we turning into?
Department of Health officials have this week been instructed to draw up options for the return of discretionary medical cards to people who lost them in the most recent review. As for people who have lost their cards following earlier reviews, it said there was currently no legal basis for restoring eligibility.