Reducing discrimination and financial burdens for people with cancer

Some Australians with cancer face discrimination when attempting to access financial services, are treated unfairly by their employers, and face significant financial burden when travelling for treatment.

Laws and policy are not often considered a part of the cancer experience, but they have a significant impact on outcomes for cancer patients, their families and health professionals, according to a report by the McCabe Centre for Law and Cancer and Cancer Council Victoria.

In the first stage of our project Making the law work better for people affected by cancer, we asked people affected by cancer to share their experiences accessing financial support when travelling for medical treatment, financial services, such as life and travel insurance and whether they had faced discrimination at work.

We consulted with a variety of professional, and community stakeholders through workshops, round tables and an online survey of more than 550 members of the Breast Cancer Network Australia's Review and Survey Group.

With around 125,000 Australians diagnosed with cancer each year, it's important we get these laws and policies right.

Financial burden

Many patients and carers talked about the financial burden of cancer and, particularly, the costs of transport and accommodation for treatment.

This burden is greatest for those living in rural and remote areas who will almost always need to travel for some components of their care. As geographical isolation increases, cancer care is less accessible.

These costs can affect the decisions people make about treatment and recovery; those worried about the financial burden of treatment may be less inclined to choose a particular care pathway. Significant travel and accommodation costs make people more likely to defer treatment or seek alternative treatment options.

Disturbingly, the further from a metropolitan centre a cancer patient lives, the more likely they are to die within five years of diagnosis.

The patients and carers we spoke to welcomed the support available through government patient travel assistance schemes, but most considered it too modest to cover the true costs.

Victorian cancer patients, for example, are eligible for government support of $35+GST per night for accommodation; subsidies in other states and territories range from $30 per night in South Australia, to $60 per night in Queensland.

In 2007, Cancer Action Victoria estimated the average cost of a hotel room for a night to be around $90, leaving a gap of between $30 and $60.

A rural cancer patient, who had to travel four hours to Melbourne for regular treatment, said while she received some reimbursement from the Victorian government, the cost of the trips was "outweighing the benefit":

I'm at a point where costs will stop me from continuing to see my oncologist at regular intervals.

Concerns about work

Discrimination against employees on the basis of having or having had cancer is prohibited by the Disability Discrimination Act 1992, with some exceptions relating to a person's ability to perform the inherent requirements of the job and where reasonable adjustments to accommodate the effects of a person's cancer would cause unjustifiable hardship to an employer. Carers of people affected by cancer are also protected under the legislation.

Many respondents to our online consultation reported their employers had been supportive when they went back to work, while others reported concerns, including how their employer or colleagues would respond to their taking leave; the risk of missing out on career opportunities; and losing their job altogether.

Some people reported being treated differently or avoided at work, and commented that employer and colleague sympathy could decrease very quickly when treatment was lengthy and required extended periods of leave.

People with a history of cancer were worried they could miss out on promotions due to employers having a lingering "what if?" in their minds about the likelihood of future absences.

People on casual or fixed-term contracts had particular concerns about losing their jobs – or not being rehired – if they took "too much" leave for treatment.

Carers of people affected by cancer also shared concerns about losing opportunities or their jobs if they took extended leave to care for a loved one with cancer. One online survey respondent said:

I think this comes down to people not having a complete awareness of the long-term effects of cancer post-treatment, meaning that people who have not previously been exposed to what cancer entails may have preconceived notions of how survivors are affected post-treatment.

Rather than calling for new legislative protections, most people recommended that employers, people affected by cancer and their colleagues receive more education on:

• the effects of a cancer diagnosis and treatment
• the experience of living with cancer
• the legal frameworks
• rights and responsibilities that apply when an employee or potential employee is affected by cancer
• practical solutions to common problems.

Insurance discrimination

Stakeholders were also concerned about their ability to obtain certain types of insurance. Despite discrimination laws designed to protect people with cancer or a history of cancer, some reported being unfairly denied travel or life insurance.

While insurers can take a cancer diagnosis or history of cancer into account when offering a policy of insurance, a decision to charge a higher premium or deny cover must be supported by statistical or actuarial evidence.

In a 2003 case of a woman with advanced breast cancer who disclosed her condition to a travel insurance company, the Federal Court held that a blanket denial of coverage was unreasonable. The woman was no more likely than a person without breast cancer to make a claim on her policy in relation to, for example, lost luggage; but the insurance company treated her application in a formulaic way, without directly considering her particular circumstances.

Despite anecdotal reports of insurers refusing cover for cancer patients, very few cases have been referred to human rights commissions. Respondents to our survey suggested that for people affected by cancer, complaining or taking action against insurance companies would be too great a burden.

Some people were worried about the implications of having genetic testing for hereditary cancers. While some wanted to undergo testing to be able to look after their health, they feared the results might prevent them or their families getting insurance.

If the genetic testing shows I have an increased risk of cancer then this may influence decisions insurers may make about my children. I worry about the flow on effect. (Online survey respondent)

Insurers are allowed to take genetic test results into account when assessing a person's risk profile, just as they would any other health information. But, like any other relevant health factor, a decision to offer or decline cover must be supported by evidence.

In a case study published in the Medical Journal of Australia, Louise Keogh and Margaret Otlowski describe the experience of an Australian man who was refused insurance on three separate occasions on the basis of genetic information he disclosed. This was despite having provided information to the insurers to show that, with regular health checks he was at no greater risk of developing cancer than the general population.

The man, who complained to the Australian Human Rights Commission, was eventually offered full cover by an insurer. But the authors highlight the case as an example of the "high level of initiative and proactivity required for a consumer to achieve a fair result".

Towards a fairer system

The next stage of our project is to inform people with cancer and their families about the law and their legal rights and responsibilities, as well as supporting improvements to existing laws.

One of the recommended reforms is to increase Victorian transport and accommodation subsidies. We will also undertake education sessions and raise awareness about transport and accommodation support services, workplace rights and insurance discrimination protections.

The law is not always visible to those affected by cancer, but it affects their experiences in a number of ways. We need to develop an approach to cancer support that includes a better understanding of how laws and policies can protect and support the thousands of people who have to deal with a cancer diagnosis and improve them where they don't serve us well.

Where to go for help?

For help with cancer-related financial or legal problems in the meantime, call the Cancer Council Helpline on 13 11 20 for information and support.

To make a free and confidential discrimination complaint, contact the Australian Human Rights Commissionon 1300 656 419, or your state or territory equal opportunity or anti-discrimination board or commission.

For employment problems in particular, call the Fair Work Ombudsman on 13 13 94.

This article was co-authored by Sondra Davoren, Senior Legal Policy Advisor and Deborah Lawson, Legal Policy Advisor at Cancer Council Victoria

Jonathan Liberman, Director of the McCabe Centre for Law and Cancer; Senior Fellow of the Melbourne Law School, University of Melbourne

This article is republished from The Conversation under a Creative Commons license. Read the original article.