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Weekly Blog: What is financial toxicity?

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By Tim Baker

If you’re suffering from financial toxicity, you probably don’t need the concept explained to you. The ongoing costs of cancer treatment, changed financial circumstances, loss of income due to ill health, can all contribute to a dangerous downward spiral of stress and quality of life.  

The Clinical Oncology Society of Australia (COSA) defines financial toxicity in this way: “The negative patient-level impact of the cost of cancer. It is the combined impact of direct out-of-pocket costs and indirect costs and the changing financial circumstances of an individual and their household due to cancer, its diagnosis, treatment, survivorship and palliation, causing both physical and psychological harms, affecting decisions which can lead to suboptimal cancer outcomes.”

Financial toxicity is increasingly being recognised alongside the other significant challenges of managing a cancer diagnosis, the side effects of treatment, like fatigue, pain and nausea, as well as mental health issues.

So, what do we do about it? On a systemic level much needs to change. “Financial toxicity is a blind spot for many medical staff,” according to a COSA report on the subject. “Opportunities to reduce out-of-pocket costs must feature within the proposed National Medicines Policy review, and local initiatives to identify people vulnerable to financial toxicity early such as through the use of risk screening tools and ensuring informed financial consent, could connect people with financial counselling services.”

As anyone with any experience of the health care system knows, the cogs of change turn slowly, so what do we do in the meantime? The sudden plunge into the world of being a cancer patient is traumatising enough without the added financial pressures. Financial management is definitely not my strong point. I tried reading the Barefoot Investor once and all I got out of it was a headache and a sense of inadequacy. With that consumer warning, herewith a few tips from my own fraught experience of trying to stay financially afloat while managing a cancer diagnosis.

  1. Do you have life insurance? Did you tick the box for trauma insurance? If you did you might be entitled to a lump sum pay-out to help manage the bills until you work out a more long-term financial plan.
  2. If you don’t have life insurance, or trauma insurance, do you have superannuation? Many superannuation accounts have life insurance or even disability insurance attached to them. You may also be able to access your super on the grounds of financial hardship. Speak to your superannuation provider to see if they can help.
  3. Go see Centrelink. I know, I know, this can be a deeply dispiriting and time-consuming business but at least the threat of Robodebt is no longer stalking welfare recipients. If you are unable to work, you should qualify for some sort of income support. If you have advanced disease you may qualify for a Disability Support Pension, which also comes with a Concession Card. This handy little number reduces the cost of everything from your medication to council rates, movie tickets and myriad other day-to-day expense.
  4. Depending on your diagnosis, you may qualify for the National Disability Insurance Scheme (NDIS). Even if you don’t consider yourself disabled by your illness, if early intervention could prolong the period you are able to live independently you might qualify for some modest funding for things like exercise physiology to help keep you fit and healthy for as long as possible.
  5. Can you continue to work? This is the most vexed question for many cancer patients, balancing health management with cold, hard financial realities. Even if you can’t work full-time in your current position, can you go part-time? Can you re-train for something that better suits your capabilities during and after treatment? Are you up for a wholesale career re-invention towards something that feels more nurturing? A cancer diagnosis can inspire a profound re-assessment of life priorities and maybe it's time to rekindle that dream career path or idealistic whim.
  6. We are indeed fortune to live in a country with universal health care but there are still substantial gaps in the system. At least we are not in the US where medical bills are one of the leading causes of bankruptcy and health crises routinely rely on GoFundMe campaigns. That said, don’t be coy about asking for help if you have friends, family or other loved ones in a position to assist. It can be confronting to feel like a charity case but if people want to offer help, try and be prepared to graciously accept.
  7. Can you find a doctor that bulk bills? They are becoming rarer but there are some magnanimous souls who still extend bulk billing to patients facing financial hardship. It’s worth asking if you are struggling to meet your health care costs.
  8. Informed Financial Consent is a thing. There is a growing awareness that health care providers are obliged to provide patients with a clear understanding of the costs they are incurring for treatment and a national standard has been formulated. According to the Cancer Council website: “The Standard for Informed Financial Consent guides health professionals and practices to discuss the risks and benefits of treatment to include cost. It assists health professionals and practices to be transparent about their fees, informing patients of other health professionals involved in their care, and discussing care options such as where the same or similar benefit can be provided at less cost, to enable patients to better consider the likely financial impact of cancer care.” 

COSA has formed a financial toxicity working group to examine these issues and ways to ensure cancer treatment does not inflict unnecessary financial hardship on patients, or that financial hardship is not an obstacle to best practice treatment. Stay tuned.

You can read more on this important topic:

https://www.cosa.org.au/about/projects/financial-toxicity-working-group/

https://www.cosa.org.au/media/q3ohepgs/financial-toxicity-in-cancer-care-7.pdf

https://www.pcfa.org.au/news-media/news/financial-toxicity-what-is-it/


About the Author

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Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include “Occy”, a national bestseller and chosen by the Australia Council as one of “50 Books You can’t Put Down” in 2008, and “The Rip Curl Story” which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.

Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but seven years on, at 57, he’s still surfing, writing, and enjoying being a dad. His latest book, Patting The Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEDT).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

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