23 Oct 2019

Overcoming the financial toxicity of cancer treatment

Ingrid Booth

Digital content specialist, Investec

With new-generation immunotherapy drugs costing up to R1 million per patient in South Africa, the eye-watering cost of cancer treatment is blocking access to life-saving drugs. 

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Siyanda Xaba, an Investec employee, was diagnosed with a rare form of liver cancer at the age of 27 years old. In fact, it was so rare that drugs needed to be flown in from the UK to save her life.

 

Siyanda was one of the lucky ones who had medical aid in place, but this generally only covers up to 80% of the costs, leaving patients to deal with co-payments on treatments that escalate into thousands of rands. In fact, according to the Cancer Alliance, the average cost of specialty cancer medicines in South Africa is R23,533 per item.

 

In addition to medical bills, there are often hidden like childcare, home nursing, and lost income and savings that add additional stress on the cancer patient.

 

The distress caused by out-of-pocket costs facing cancer patients has been termed “financial toxicity” by the medical fraternity.

 

Physicians in the Oncology journal write that financial toxicity can significantly impede your quality of life: “Out-of-pocket expenses related to treatment are akin to physical toxicity, in that costs can diminish quality of life and impede delivery of the highest quality care.”

 

In this podcast, we explore some of the financial options available to alleviate this stress and examine the medical and psychological aspects of Siyanda’s cancer journey.

 

The podcast is the third and final episode of an Investec Life series on women’s health that shares stories of Investec women who have conquered cancer. The campaign seeks to share expert insights on the disease, and why women need to invest in their health by ensuring they have the right cover in place.

Part 3: Overcoming the financial toxicity of cancer treatment

This wide-ranging podcast looks at a potential solution for the high cost of cancer treatment, as well as the psychological and medical aspects of the disease.

Cancer on the rise in South Africa

Liver cancer is one of the lesser-known cancers in women, even though Sub-Saharan Africa has one of the highest incidence rates in the world.

 

In South Africa, The Lancet projects a 78% increase in cancer cases by 2030, due to rapid urbanisation, pollution, an ageing population, endemic viral infections and increasing obesity rates.

78%
Increase in SA cancer cases by 2030

Podcast highlights

Read the full transcript or skip to the sections that interest you using the time codes below.

 

IB: Ingrid Booth, digital content specialist, Investec

SX: Siyanda Xaba, IT Service Desk Analyst, Investec

GD: Professor Georgia Demetriou

GS: Grant Statham, clinical psychologist, Maureen Kark and Associates

SN: Sinenhlanhla Nzama, Investec Life head product actuary

  • 00:00: Siyanda’s story

    Siyanda Xaba: My name is Siyanda. I am 29 years old. I was diagnosed with liver cancer in July 2017. I fell ill before I got diagnosed. I went through numerous doctors who actually thought it was ulcers. They couldn't track that it was actual cancer. I was admitted at the Lenmed hospital, they did all kinds of tests, from blood tests... everything that wasn't done before.

     

    The doctor came in: “Hi Siyanda, you are very lucky to have been admitted at this time, if we had found the cancer longer, you wouldn’t have survived”. Apparently, I was going to survive a month or so, before my actual death. 

     

    Ingrid Booth: Siyanda Xaba is an IT Service Desk Analyst at Investec and is one of the brave women who are sharing their cancer experience as part of an Investec Life campaign on women’s health.

     

    Siyanda’s story is about courage, fighting and rising up to beat severe illness. Our hope is that her words may inspire more South African women to make the move from not covered, to covered.

     

    I am Ingrid Booth, part of Investec’s Digital Content team, and this is the third in a three-part Investec Life podcast series. We covered breast and lung cancer in the previous two episodes, so if you’re interested, please have a listen to those wherever you get your podcasts.

     

    For today’s episode, we gathered a team of experts to talk about the medical, psychological and financial aspects of liver cancer.

     

    Primary liver cancer is the sixth most common cancer globally and the third leading cause of cancer-related deaths.

     

    Liver cancer is a lot more prevalent in developing countries where new cases increased by 50% between 2005 and 2015. I asked well-known oncologist Professor Georgia Demetriou why this is the case…

  • 1:45: Why liver cancer is more prevalent in developing countries like South Africa

    Professor Georgia Demetriou: Liver cancer if it starts in the liver is a rare cancer.  It is a cancer that has got one of its highest incidences in sub-Saharan Africa and that’s probably related to multiple factors - Hepatitis B, Hepatitis C, the aflotoxins and it's all a combination of things.

     

    Anything that can cause cirrhosis of the liver, and that could be excess of fatty depositions which over a long time causes what we call non-alcoholic steatohepatitis and then cirrhosis.  That can also damage the liver and cause liver cancer increased risk, excessive alcohol, which causes initially inflammation and irritation and damage of the liver, and then can become a Hepatocellular Carcinoma or an HCC as we call it. 

     

    Sometimes aflatoxins on nuts if they are stored in a damp area, they get a fungal infection on them that has been implicated as well  in increasing the risk of Hepatocellular Carcinoma. Sometimes we just don't know and it's idiopathic, as so many cancers sometimes are.

  • 2:48: The symptoms to look out for

    IB: Siyanda’s symptoms started as chest pain and headaches, which is why the doctors originally diagnosed stomach ulcers. I asked Professor Demetriou what you need to look out for…

     

    GD: So in terms of liver cancer you can sometimes get a blockage of the bowel ducts that run through the liver and the patient will present with either yellow eyes what’s called jaundice or yellowing of the skin, itchiness of the skin, but that's often when the lesion is quite big and it's already blocking the outlet of bile. 

     

    If you have a smaller lesion but it's starting to occupy space within the liver the liver enzymes can start to go up so a patient might go to their GP, they’re feeling a little bit nauseous maybe a bit queasy, and they do a set of bloods and they say this is a bit abnormal let's go do a sonar and look. Sometimes it's just incidental pain, sitting just below the rib cage, on the right hand side of the of the abdomen, can also be a hint that there could be is something going on.

     

    So very non-specific symptoms until you have a very advanced case where you maybe then have the yellow eyes with the obstruction of the bile bleeding out from the actual liver.

  • 3:54: How much alcohol is too much?

    IB: Siyanda’s liver cancer was not related to alcohol, but many cases are. Professor Demetriou explains why moderation is key…

     

    GD: They say that even one drink a day is too much. So maybe one a week if you can limit it to that, maybe a second one, but don't overdo it.  More and more literature is saying that even one is maybe a little bit too much.  But it's about moderation.

  • 4:16: The cost of cancer treatments

    IB: While medical aid is essential, it doesn’t always pay for all the extra treatment required, especially in Siyanda’s situation where she had a very rare form of liver cancer.

    SX: My doctor said they had to go through extreme measures to heal this cancer in me. It's a very rare cancer, he said 1 out of 1000 people survive. So he said I'm very lucky, he said they had to import treatments from London or something, so I feel very special.

    IB: It is these extraordinary measures needed to save a life that can run into hundreds of thousands of rands. Fortunately, there is a cover which can help you pay what medical aid can’t. Severe illness cover is triggered on diagnosis of even early stage cancers and is paid directly to you to use on whatever you need to get the best treatment. Sinenhlanhla Nzama, lead product actuary at Investec Life, explains…

    Sinenhlanhla Nzama: Radiation and chemotherapy can cost as much as R100 000 per treatment cycle in South Africa.  Given the flexibility of how you can use the pay-out from a severe illness cover, I think, what is also important is that it gives you the options to explore experimental treatments, and more importantly to even partake in drug trials that may be happening overseas.  So the pay-out that you get, is both to participate, but also to travel overseas and to stay overseas, and to pay for your family and your spouse, who you will probably need the support from while you are overseas and partaking in the trials.

  • 6:10: Why severe illness cover is imperative when you’re self-employed

    IB: Siyanda was off work for seven months. Fortunately, she was covered by her company via an income protection policy, but if you are self-employed, severe illness cover can cushion you from lengthy stays off work.

     

    SN: Unfortunately, if you are self-employed or you are in private practice, or an entrepreneur out there, you are on your own, so you have to have made your own provisions. Or sometimes even if you work for a smaller or medium-sized company, they may not have those provisions for you, so you need to look after yourself and be able to make those provisions.

     

    These are the are the types of things that can't actually rely on your emergency savings because your emergency savings will last for about three months or so, if you’re lucky, so you really need to ensure that you've got good financial products or insurance in place to look after you.  

     

    When it comes to self-employed and doctors and in private practice, as an example, what is also more important, is more than just protecting your own income, but also the expenses of the business and typically you'll need to bring someone, like a locum, someone to look after your patients while you're out.

  • 7:08: The added value benefits of severe illness cover

    IB: According to Sinenhlanhla, it’s not only important to look at what’s covered when choosing a severe illness cover, but also what added value you can get…

     

    SN: With severe illness I think there are also other added benefits that you need to look out for. With Investec Life specifically, you will find that there is automatic cover for your children up to the age of 23, so that really gives you peace of mind that any severe illness including cancer that may happen to your kids is fully covered.

     

    But other things are supportive mechanisms like counselling, expert opinion, even second opinions that you may require that is paid by your product is quite important.

  • 7:42: What age should you take out severe illness cover?

    IB: Severe illness cover is definitely not something on the mind of an average 20-something like Siyanda. I asked Sinenhlanhla how early we should start getting this cover in place?

     

    SN: It's hard to give an age but I think to be prudent, the moment you have financial means, that means the moment you start working, get some coverage, even if it means you're getting the R250 000 the bare minimum and you increase it as you progress with your career that is perfectly fine. But just get something, that R250 000 can go a long way in topping up your medical aid treatment.

  • 8:12: The psychological journey of someone with cancer

    IB: Moving onto the psychological impact of a cancer diagnosis, getting the right support is critical. Siyanda didn’t tell many people about her illness until she herself had got her head around it.

     

    SX: I didn't want a lot of people to know. I didn't tell most of my family. I didn't tell my colleagues. I didn't tell my friends. Because when I first started getting ill, everybody knew that it was ulcers, so I was like “ok let them know that it was ulcers, it's fine, I'll deal with the cancer, and when I'm healed, then they will know”. I didn't tell a lot of people, only my grandmother knew.

     

    IB: Clinical psychologist, Grant Statham from Maureen Kark and Associates explains that people with cancer may seek different kinds of support at different stages…

     

    Grant Statham: For everybody it’s a personal journey and it’s really unique, so the need for psychological support for each and every single person will be completely unique and so it’s influenced by a whole list of internal, external, societal factors, cultural differences, history etc.

     

    So people may need assistance with the initial diagnosis, or the trauma related to the diagnosis, they may need assistance with resilience factors and support in getting through treatments which
    are often very debilitating and quite intrusive. 

     

    They often have difficulty often in navigating the changes that are associated to disruptions in normal functioning and relationships and systems in which they normally operate.  And sometimes there’s even chronic pain. So we can categorically say that psychological and social support is really, really instrumental in helping people to navigate this journey successfully, and it’s imperative.

     

    There’s also a whole host of research that shows that people who undertake proactive psychological support seem to have better prognostic factors.  So they tend to stick to their treatment regime a lot better and are able to endure their treatment regime a lot better and also have an improved quality of life, both during the treatment process and post the treatment process.  So absolutely invaluable.

  • 10:12: The impact of a cancer diagnosis on your loved ones

    IB: When she returned to work, Siyanda met her now fiancé who has been a pillar of strength, especially when she has to go for check-ups...

     

    SX: He’s very supportive, he is loving, he is everything I could ask for in a man. I'm happy to have him in my life. And he just holds my hand. He knows I don't like going back to the hospital. So he's there to distract me. We Google up on riddles, he tells me jokes just to make me laugh, and not actually concentrate on the fact that I’m seeing the wards again and stuff, so he's very supportive.

     

    IB: But partners of women with cancer go through their own internal struggles, says Grant…

     

    GS: You know no one wants to see a loved one going through a process and often within a cancer journey we feel quite powerless to assist, because we don’t necessarily understand the journey and there’s nothing we can do to alleviate the distress or the symptoms etc. 

     

    They also tend to want to make space to care for the individual that’s going through the process, so they want to be as physically and emotionally available as possible and often what happens is they ignore their own physicality and they ignore their own emotional needs in the interests of not upsetting the individual. 


    We also forget that they also are expected to continue their normal roles and functioning, and they go to work, and they still have to contribute and often they also pick up the additional roles that their partner used to carry. 

    So when navigating a cancer journey, I always advocate that psychological support is provided to the cancer patient as well as the individual process being provided to their partner, or their primary care relationship, and then at a later stage that they engage in a couples process, so that they can discuss some of their experiences and how they navigated those experiences and what some of the expectations and requirements are from the support system, you know, going forward, and how they navigate the new challenges.

  • 11:58: Siyanda’s message of hope to other women

    IB: Siyanda’s story is truly miraculous and she hopes it will help other women walking the same path…

     

    SX: Yeah, after feeling ill, and going through all that traumatic experience, you do become grateful for each and every thing that happens in your life. The smiles, the thank you’s that you get back, the smiles that you put on other people's faces.  It's the little things that actually make you feel grateful for living and having to share your story like I'm doing now to the other people that didn't have hope at all, and them finding hope in your story.

     

    IB: Thank you for listening to the third and final episode of our Investec Life series on women’s health. You can download parts one and two from your podcast channel of choice. Please take the time to rate this conversation and to subscribe to Investec Focus Radio.

     

Watch Siyanda's story

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    Investec Life Limited, a member of the Investec Group, is a registered Long-term Insurance Company (Reg.No. 1944/017130/06) and an authorised Financial Services Provider (FSP number 47702). Terms and conditions apply.

     

    This is the copyright of Investec and its contents may not be re-used without Investec's prior permission.  

About the author

Ingrid Booth image

Ingrid Booth

Lead digital content producer

Ingrid Booth is a consumer magazine journalist who made the successful transition to corporate PR and back into digital publishing. As part of Investec's Brand Centre digital content team, her role entails coordinating and producing multi-media content from across the Group for Investec's publishing platform, Focus.