Not only is Karen Armanasco dealing with terminal cancer — the grandmother is also trying to pay for it.

After being diagnosed with neuroendocrine cancer in her lungs, she estimates she spends $300 each month at the pharmacy on off-the-shelf items alone.

Karen’s monthly pharmacy bill includes over-the-counter pain medications, essential vitamins, laxatives, anti-diarrhoea medicine and incontinence pads.

“I can only afford pull-up incontinence pads when they’re on special,” she said.

“It stops you from going out because you can’t trust your bowels or your bladder.”

The Ipswich woman is one of the many people with chronic illness struggling with the cost of pharmacy items.

Chronic Pain Australia chief executive Renee Rankin said their patients could spend up to $200 a month on off-the-shelf products such as pain medicine and heat packs, and more on scripts.

“Living with chronic pain is really expensive,” she said.

“There are a variety of things we rely on to manage pain.”

The organisation’s National Pain Survey found one in four patients sometimes could not afford their medications.

Some were skipping scripts or supplements, forgoing food and fuel and even turning to illicit drugs instead.

The findings are backed by a survey released by the Australian Patients Association, which says nearly three in four Australians report they are either delaying or skipping basic health care for financial reasons.

The association’s chief executive, David Clarke, said their survey of 9,000 patients found 28 per cent skipped their prescription medication due to cost concerns and it was likely worse for non-script items.

“There’s been health cost issues for some time now, but the cost-of-living rises in recent times have really created a serious problem,” he said.

One in three had changed the way they pay for health care, with more than half moving to credit cards and 43 per cent borrowing from other sources.

He said when people skipped basic health care it had flow-on effects across the system, leading to the need for more costly treatments later on.

Sharps bins recycled at local tip

Karen’s costs are in addition to her regular Pharmaceutical Benefits Scheme (PBS) subsidised scripts that include strong pain medications, inhalers and heart drugs.

The PBS does not subsidise Karen’s cancer medication because it does not cover neuroendocrine cancer. She has only been able to access the monthly injection under a pharmaceutical company’s compassionate scheme.

The needles need to be disposed of in special sharps bins for safety but they can retail for $16 each. Some local councils run recycling schemes to help the public access them.

“I get my sharps bins from the tip where they sell them for $1,” Karen said.

It comes after she had to use her retirement savings to cover more than $10,000 in out-of-pocket costs of her initial surgery and scans.

Neuroendocrine cancers are the seventh-most-common cancers in Australia by number and because they are related to the body’s hormone systems they have wide-ranging side effects.

Yet there is no financial assistance for the grandmother. She does not qualify for a government Health Care Card, which may help reduce other out-of-pocket expenses for services like scans.

The federal government does provide a Pharmacy Allowance to people who receive some Centrelink payments but at the current rate of $6.60 a fortnight, it would cover one concession script.

Many essential items not covered

Karen Armanasco is not alone.

Pharmacists told the ABC that surgical patients could struggle with the costs of specific wound dressings and those with skin conditions often needed expensive hypo-allergenic hygiene products.

There is also no help with the costs of asthma spacers, antihistamines, pregnancy vitamins and strong paracetamol (Panadol Osteo) for those with arthritis.

Yet there is a model for support.

The National Diabetes Services Scheme (NDSS) covers most of the costs of a range of items for diabetics including blood glucose test strips and syringes.

Chronic Pain Australia would like to see PBS subsidies for pain medicines expanded to include people with chronic pain to save them money on private script prices.

The Australian Patients Association said better awareness and uptake of the government’s MyMedicare and 60-day script schemes would help reduce health costs to vulnerable patients overall.

In a statement, Health Minister Mark Butler said the government had helped with pharmacy costs by reducing the co-payment on scripts to $30 and lowering the PBS safety net, which is the limit where scripts become free for concession card holders or drop to concession price for everyone else.

“This has reduced the yearly medicine costs for more than 2 million Australians by as much as 25 per cent this year,” he said.

The introduction of 60-day scripts had also saved more than $9 million, he said.

In the first three months, 1.2 million scripts have been issued for 60 days.