Counting the cost of cancer diagnosis

Those dreaded words – ‘it’s cancer’ – map out an immediate future of treatment plans, hospital trips, physical endurance and a psychological adjustment that equips the patient to fight for life. But the significant out-of-pocket costs during diagnosis, treatment and follow-up care, which drain life-savings or incur additional borrowings, mean that, for many cancer patients in Ireland, fighting the disease is only half the battle.

Financial burden of diagnosis

The Irish Cancer Society (ICS) is warning that a growing number of cancer patients are struggling to meet the significant extra costs of having cancer. 

Whether it’s visiting their GP or hospital doctors, lengthy hospital stays or in-home care, time off work, extra childcare costs, treatment-related travel costs, or prescription and over-the-counter medicines to help alleviate the symptoms of cancer and the side-effects of treatment, these additional expenses can accumulate at a distressing rate.

As more cancer patients find themselves in financial jeopardy as a result of their diagnosis, applications to the charity’s Financial Aid Scheme have risen by over a third (36%) in the last three years. 

The Society now provides more than €1 million a year to cancer patients who need financial help, and the ICS expects this figure to rise again in 2013. 

Concern is also being voiced over the psychosocial effects on cancer patients who are being pursued by debt collection agencies, hired by the HSE to chase non-payment of bills such as hospital admittance charges and chemotherapy treatment. 

Patients awaiting medical cards are also being asked by the HSE to pay for chemotherapy treatment, according to the ICS.

Added anxiety

“We are hearing an increased anxiety from our callers about the cost to them of having cancer. We are giving more financial support to those who need it but we are seeing a growing number of cancer patients who are simply unable to manage the extra cost to them because they have cancer,” confirms Kathleen O’Meara, head of advocacy and communications at the Irish Cancer Society. 

These stressful money worries experienced by well over half of cancer patients in Ireland is not a new development. For many years, the ICS and healthcare professionals have been aware that a cancer diagnosis is not only a health and psychological burden, but also a considerable financial drain for a large proportion of patients. 

“Ten years ago people might have had some personal savings and they would have used this to help with the extra cancer-related costs or to pay household bills but, these days, people have little by way of savings and many are living week-to-week, month-to-month, or even day-to-day. When it comes to these extra costs, it’s a huge worry for them,” says specialist cancer nurse, Colette Grant, from the ICS Daffodil Centre at Cork University Hospital and the Bon Secours Hospital, Cork. 

Practical support

The Society currently has eight Daffodil Centres in hospitals in Cork, Dublin and Galway, which provide cancer information, support and practical advice. 

Plans are at an advanced stage for four more in Letterkenny, Waterford, Limerick and St Vincent’s Hospital in Dublin over the next year, as part of an overall €3.6 million three-year investment to rollout Daffodil Centres nationwide.

“Since the Daffodil Centre opened up here in Cork in 2011, I have seen a mixture of groups who are experiencing financial hardships as a result of their cancer diagnosis; older people who have their mortgages paid off but have resolved to using their life savings to compensate the fact that the main income worker isn’t earning and, as a result of that, they find themselves with no nest egg, unable to retire, in an economy where their income isn’t as good, and they are very worried about their future.

“Then you have younger families, who obviously have very little savings because they are spending their weekly or monthly incomes on the day-to-day necessities; they are really finding it a big problem. 

“Whether it’s additional heating bills as a result of having chemotherapy; additional childcare costs, having to come up to treatment once a week and putting the kids in childcare; additional petrol costs; additional dietary requirements if they need particular types of foods; and medications. 

“These extra money worries are very stressful for patients who already have enough on their plate to deal with,” Colette says.

Help available

The rising number of cancer patients needing cash support for necessities prompted the Irish Cancer Society to publish a booklet on how to manage the financial impact of cancer, which gives details of social welfare supports and other benefits. It is available on the Society’s website www.cancer.ie, as are details of the Financial Aid Scheme (max once-off payment €1,000; average payout of between €350 and €500).

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Last year, all of the charity’s patient-facing services recorded an increase in queries about how to bear the cost of cancer. For the first six months of 2012, 20% of requests for help at the Daffodil Centres related to financial assistance or practical support for a cancer diagnosis. 

This trend reflects research published by the National Cancer Registry of Ireland (NCRI) in 2010 – The Financial Impact of a Cancer Diagnosis – which revealed that 55% of cancer patients surveyed had to use their savings to cover costs because Government support or private health insurance was not adequate. 

And the Irish Cancer Society says that this figure has since increased significantly due to further harsh Government cuts.

Quantifiable cost

The NCRI investigation, supported by the ICS, was the first time that the financial burden of a cancer diagnosis was measured or quantified. The report revealed that almost half (45%) of patients had incurred costs in relation to seeing hospital consultants about their cancer diagnosis and treatment. 

The average amount spent was €465 but one quarter had incurred costs of more than €800. Two-thirds of those with private health insurance had some out-of-pocket expenses for seeing consultants, compared to 11% without health insurance. More than one third (36%) of cancer patients had paid, on average, €250 to see a GP following their cancer diagnosis, while one in four of those had incurred costs of more than €400. 

Again, a far greater number of patients with health insurance had out-of-pocket GP-related costs, compared to patients without (48% versus 16%).

In terms of supportive medicines, three in 10 patients had incurred an average cost of €300 for prescription items as a result of their cancer, with a quarter of them spending at least €700. And two in five cancer patients had paid an average of €100 for over-the-counter medicines, rising to more than €200 for a quarter of patients.

Travel costs were also significant; more than seven in every 10 respondents had travelling expenses associated with their cancer treatment appointments. The average spend was €360, with one in four spending more than €780.

In addition, just over half of patients (52%) were out of pocket by almost €80, on average, for hospital parking fees, and a quarter of them had paid out more than €160 for parking alone.

The report called for great attention to be given to alleviating the financial costs of undergoing cancer treatment, including additional transport initiatives and hospital-based financial advice services, and specifically recommended that applications from cancer patients for medical cards and other benefits should be fast-tracked, in view of the rapid course of the disease in many cases. 

“It doesn’t take long for all of these expenses to add up; the financial impact is huge. It affects every aspect of cancer patients’ and their families’ lives, including delaying or foregoing medical care, in some cases. Patients sometimes cancel their clinic visits,” remarks Ellen Joyce, director of services at Cork Arc, which provides emotional and practical support for cancer patients. 

“We run a drop-in centre where people can access counselling and a range of complementary therapies, such as massage, reflexology and stress management. It’s all free-of-charge, however, travel is expensive if you are already stretched and patients find it difficult to justify that extra spend on themselves. 

“Affording to get to the essential services for their treatment is really important and that’s already a big financial pressure.”

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Travel considerations

The Irish Cancer Society set up a volunteer driving programme called Care2Drive, now operating from 10 hospitals nationwide, which provides free transport for cancer patients to and from their treatments. 

Ellen also highlights other invaluable shuttle services, the Cancer Link Bus and Tralee Bus , which bring cancer patients in West Cork and Kerry to Cork University Hospital, seven days a week. In 2012, Cancer Link provided transport for patients to attend 3,600 appointments for radiotherapy.

“There are similar services around the country too, run on a voluntary basis, and the reason these services exist is because there is a huge demand. 

“They are essential for two reasons; people may not be physically able to drive themselves home after treatment, particularly if they have to travel long distances, and, financially, it’s a huge drain on resources. If you were driving from Castletownbere to Cork city every day for treatment it would cost you a small fortune in no time at all.

“This can be a tremendously stressful time for many people who are in a vulnerable place and should be focusing on getting well again. I’m not sure if the health authorities fully appreciate the degree to which some people with cancer are struggling financially as a result of their diagnosis.”

Bureaucracy and bankruptcy

Compounding these difficulties, many patients report that the process of obtaining medical cards, HSE and social welfare payments, as well as applying for ICS financial aid, can be complex and demanding, and may involve a long wait.

“Some people are good at filling out forms and jumping through the hoops some of these application forms ask of them, but many find the whole process daunting and exhausting; they’re quite detailed and specific, and can be prohibitive for some people who just have too much to cope with already,” Ellen points out. 

Although many studies have assessed the economic impact of cancer on the healthcare system, the 2010 NCRI/ICS report is one of only a few investigations worldwide into the impact cancer has on the financial status of patients and their families.

In Wales, despite more than 50% of people with a cancer diagnosis expressing worry about their finances, only a quarter of cancer patients discussed their money situation with a health or social care professional, and this figure was reduced again among the over 65s to just 11% (Macmillan’s Counting the Cost of Cancer campaign 2012). 

A US study last year found that many survivors of adolescent and young adult cancers were avoiding routine medical care because it was too expensive, despite the fact that most have health insurance.

A 2011 analysis linking US federal bankruptcy court records to cancer registry data revealed that bankruptcy rates increase along with survival time. 

Compared to the general population, bankruptcy rates were nearly twice as high among cancer patients one year after diagnosis, increasing to fourfold within five years of diagnosis, and the median time to bankruptcy was two and a half years after diagnosis.

Another US report by the American Cancer Society and the Kaiser Family Foundation in 2009 found that high out-of-pocket costs coupled with the high cost of insurance premiums were forcing cancer patients to incur huge debt, and to even delay or forgo life-saving treatments.

Canadian researches reported in 2008 that women diagnosed with early breast cancer lose, on average, more than a quarter of their typical income during the first 12 months after their diagnosis. 

And a number of other studies highlighted that this increased financial stress and strain is associated with a greater likelihood of experiencing depression, anxiety or emotional stress. 

Growing problem

Ellen remarks: “The problem isn’t going away, it’s getting worse. In some cases, families have lost the income of the main wage earner who is sick. This has devastating consequences for an already distressed family. 

“Add to this the extra cost of getting to hospital appointments, medications, extra babysitting, and the simple fact of family routine upset. I believe none of this is really understood. It is essential that Government and our community are aware of the financial burden on most cancer patients and their families, and look at how simple measures, such as transport and medical cards can be made more accessible for patients.”