Money and the healthcare system

Kellie Curtain [00:00:05] Let's be upfront about out-of-pocket costs that come with a breast cancer diagnosis - and they can be massive. Many with private health insurance are left with bills in the tens of thousands of dollars because many aspects are not covered. The cost of ultrasounds, biopsies and radiology quickly add up not to mention the fees charged by some surgeons. And those in the public health system are not immune either. Survivorship is expensive especially when ongoing costs such as physiotherapy or garments for lymphoedema aren't fully covered. In this episode of upfront we're talking to BCNA CEO Kirsten Pilatti who with more than a decade of experience in the breast cancer space has heard countless stories from our members who've been left with crippling debt because they didn't know there was an alternative. KP as she's known is going to share some useful tips that will empower you to ask the right questions of health providers and help you navigate the systems to help ease bill shock. Welcome KP.

Kirsten Pilatti [00:01:08] Thanks Kel it's great to be here. And I can tell you that this is a topic that makes my blood boil so if I get fired up you might have to call the fire brigade.

Kellie Curtain [00:01:19] Well and rightly so because so many times when you speak to members around the country this is the number one cause of massive distress for people isn't it?

Kirsten Pilatti [00:01:32] Yeah it sure is and I think it comes from the very beginning and it doesn't just affect the person who's been diagnosed but also the family. And I think if you look at our Online Network many times it's 2:00 a.m. when the women and the men are awake they're actually worried about how they're going to pay the next bill and that's really how this whole topic came to surface as a priority for BCNA.

Kellie Curtain [00:01:57] Okay. So what we're gonna try and do today is work through some of the issues and perhaps you can give some tips and guidance as to how you can avoid that bill shock because I think the thing with breast cancer is that you don't just get one lump sum. It gradually builds up and all of a sudden you've got this accumulated debt. And sometimes people find themselves in a real pickle because they don't know how they can get out of it or how to have avoided it in the first place. So what's the first point of call? Should we start thinking about costs at the point of diagnosis?

Kirsten Pilatti [00:02:40] Yes we should. Whose responsibility is that is probably where my first priority lies and we have done a lot of work in trying to make sure that at the point of diagnosis the time when the person the woman or the man's life is turned upside down they are not in a position to be thinking first and foremost about finances. All they want is to get the cancer out of their body or their family want is for mum or for dad to be better. And so whose responsibility is it? And for me when I travelled around the country over and over again I heard that all our members were ever asked is "do you have private health insurance?" Now that was either asked at the breast screening when they were being diagnosed through BreastScreen or through their GP. Now that is the wrong question to ask. So our role at BCNA is to say to those health professionals, yes ask them if they have private health insurance but a person's ability to pay the accumulating debt that will happen because of breast cancer doesn't isn't equated to whether you have private health insurance. So I think it's about saying to people, do you have private health insurance? Do you want to go public? There are no waiting times in Australia for you to choose public and I think that is a myth that many people kind of talk about - I'm gonna go private because I can get it out tomorrow.

Kellie Curtain [00:04:10] But you are talking about having the cancer removed as opposed to other parts such as reconstruction or other surgeries.

Kirsten Pilatti [00:04:18] Yeah exactly. And I think this that first diagnosis point is often when people make a critical decision that will impact their finances. And you know I you I want to empower our members to say you should be making financial decisions all the way along not just at the point of diagnosis and you can move between private and public very easily here in Australia. But finances are one of those things that it's really hard to talk about. And what I have found is that when you go and you meet with your clinician you get an instant connection or not with them. And when you have that instant connection it's very hard to then say "Okay you know I'm going to put my life in your hands. Oh yeah. Can you tell me how much that life is going to cost me?" It's a really hard discussion to have. And so we want to have the system deliver that for all patients in cancer not just in breast cancer to make it the responsibility of the health professional to have fully disclose how much is going to cost because I am sick to death of this system constantly relying on the consumer to be the one to speak up because not everyone can. So if you're listening and you find it really hard to ask questions my best advice to you is take someone with you who isn't afraid to say "okay what is this going to cost us"?

Kellie Curtain [00:05:51] And should it be as direct as that? And should it be at that very point? Because like you said in an ideal world we will see a change where the onus is on the health provider. But at the moment like you've just said that is not the case. So it can be quite intimidating.

Kirsten Pilatti [00:06:07] Yeah. And look I'm a person who speaks up all the time and I'm constantly having conversations with health professionals but I had to find it difficult to question someone when they're telling me there's gonna be an out-of-pocket cost. And the thing that's fascinated me most about working at BCNA is if you say to someone at every appointment can you bulk bill me. You'll be very surprised how often you can be bulk billed. And you know I think it's something that I would say to everyone don't be ashamed to ask to be bulk billed. 

Kellie Curtain [00:06:46] Okay. So at the initial diagnosis or point of discussion with a surgeon your suggestion is to ask for what you're going to be up for. And I guess for those that have private health insurance let's go back to that and say just because you have private health insurance doesn't mean you're actually gonna be better off in fact we're finding time and time again that you're much worse off just by assuming that you're going to go down that rabbit hole of private health.

Kirsten Pilatti [00:07:17] Yeah I think in Australia we're very lucky. We have amazing health professionals who work in our public setting and in fact many of the best internationally renowned breast specialists whether it be oncologists or surgeons or radiation oncologists work in both public and private. Because there's a real benefit for them working in public around their research so don't assume just because you're going privately that you're getting better care. We do know that there are less breast care nurses for example in the private setting. So what I would do is first of all don't assume that. Now there are real benefits in going private in terms of you will absolutely know who is going to deliver your surgery or your treatment. So there are real benefits in that if you are someone who needs to see the same person every time and kind of be assured by that but the very biggest learning I've had in my 13 years here at BCNA is there is not one breast specialist who can put their hand on their heart and say that they can deliver better outcomes for you so that they're going to definitely cure you or anything like that because they charge twenty thousand dollars out-of-pocket versus going to a big cancer hospital in Australia.

Kellie Curtain [00:08:40] Okay so more doesn't mean more.

Kirsten Pilatti [00:08:42] It certainly doesn't and I want to hold the system to account for that. So if you want to charge twenty thousand dollars out-of-pocket go for your life but prove to me you're worth that twenty thousand dollars and in my view right now no one can prove that.

Kellie Curtain [00:08:58] I guess as you said before people just want to get it out though does that sometimes equate to people pressing the panic button and copping those exorbitant fees.

Kirsten Pilatti [00:09:11] Totally and I think one of the real challenges with cancer is with breast cancer is that fear of it spreading to the other parts of your body. But we know that waiting will not increase your risk of your breast cancer spreading. If it's, you know for a few weeks there is no reason to panic. But that is so much easier said than done. And so you know I think that having those financial discussions very early on will actually help when you setting the expectation with your health professional that it's an important part of your breast cancer experience and we shouldn't be ashamed of that. But I think that you know sometimes that conversation is had by the receptionist in a private setting and we don't want that to happen anymore. If you are a surgeon or the radiation oncologist who's delivering the treatment then you better be accountable for what you're charging. And so therefore you should be the person fully disclosing how much that is. Now the other real trick to this is that often in the surgeon's rooms and I don't want to just stick to surgery because there are so many more out-of-pocket costs. But in the surgeons rooms they will give you their out-of-pocket costs but that won't include the anaesthetist, that won't include the assistant anaesthetist and often we're hearing that anaesthetists bills are coming just before you're about to go into surgery. It won't include how much you're gonna be charged for pathology post your treatment. So what happens is you have a treatment and the bills just keep coming and you're like, what on earth is this for? How much of that am I getting back from Medicare? You have to pay up front. You have to have the money in the bank and then Medicare will rebate you. And so just this accumulation is and can cause absolute turmoil in families and I don't mean just financially I mean emotionally. I mean in relationships and so I think people underestimate and downplay the financial impact until afterwards. And then they reflect back and go you know what. It was really hard. I was up all night just going I have no idea how to pay. And I mean the State of the Nation really brought that to the forefront. But for me to have women and men coming to our roundtable discussions shaking with bills that they had no idea how they were going to pay for them. That that sticks with me and I'm not going to stop fighting for full financial disclosure. That is the responsibility of the health professional.

Kellie Curtain [00:11:51] For those that aren't aware the State of the Nation is the report that was tabled in Parliament in 2018. Who's responsibility is it. Or maybe a better question is - with those separate costs that people sometimes aren't even expecting because you're not aware of all those extras. How can you ask for those to make sure again you know what you're up for before you go forward? Is that the surgeon that should be able to provide you with all of that?

Kirsten Pilatti [00:12:26] Well at each point you will have a different person kind of leading your treatment depending on your treatment plan. And I think it is really important that everyone understands that everyone's treatment plan is different and where your point of contact or your central point is is different. So if you're having chemo first then your oncologist you know should be able to outline it but at each point of your treatment I would be asking "what is this going to cost me?" And not just in the private setting but also in the public setting because there are out-of-pocket costs in the public setting as well. And don't even start me on car parking in the public hospital.

Kellie Curtain [00:13:08] We won't start you on that one. Is it common that particularly with say, surgery fees that people do assume that that would include the anaesthetist and the sort of services and then are surprised when it doesn't?

Kirsten Pilatti [00:13:25] Well I think when you come in when you're diagnosed and you're coming into the system you don't know anything so you're completely relying on someone to help you navigate that system. And if you don't know what you don't know then you don't know to ask what are all the costs. So you just assume that when you say to whoever your treatment time is what are the out-of-pocket pockets going to be that they will explain all out-of-pocket costs. But that's not what's happening. And that's why we've been working really closely with the Cancer Council Australia with Prostate Cancer Foundation and with Canteen to lobby for this transparency so that at each point in your treatment there is full disclosure. So it's the responsibility of whoever is managing you at that time to give you the all of the costs that are going to happen. Now where there's a breast care nurse they are often the ones who are telling you the truth about all of the hidden costs.

Kellie Curtain [00:14:26] Well that's what I was going to ask. So could your breast care nurse or perhaps your GP or even the BCNA Helpline might be able to give you an idea of some of those little extras that are all going to add up.

Kirsten Pilatti [00:14:38] Yeah exactly so one I would say that the My Journey online tool this has been a real priority for us to make sure that we're putting helpful questions at each aspect of your treatment. And so we provide through that My Journey online tool questions, financial questions you should ask. Because you know you even when you're being worked up so where you found a lump they're very sure that it's cancer all of a sudden then you start having MRIs which you know oh you have to have an MRI because you've got dense breasts . Oh sorry there's no Medicare item number for an MRI. So. But you know 400 bucks you'll be right. And and of course it's 400 to start with but then it just keeps accumulating as 400 for that. You know another 48 for pathology maybe or maybe 200 for pathology because it's been a bit more complex and so it's just it's a cumulative fact of constant cost. That is really the burden that that our members shoulder.

Kellie Curtain [00:15:44] So is that also an important tip to once diagnosed ring your private health insurer and find out exactly what you're gonna be covered for.

Kirsten Pilatti [00:15:55] I mean. This is what frustrates me. Yes that's what you should do. Should you be having to do that in the when your life's been turned upside down and you are completely frightened and you're trying to deal with the fact that you've got to tell your parents you've got breast cancer or you've got to tell your kids or your partner then oh sorry can you ring your private health and then the private health insurer says now what are the item numbers they're going to claim against because that's what we have to check against your policy. I mean it's ridiculous. It honestly is ridiculous it drives me mad but. I know. I'm sorry. I told you you'd have to call the fire brigade!

Kellie Curtain [00:16:35] Useful tips KP. Useful tips.

Kirsten Pilatti [00:16:35] So useful tips is ask them to write down all the item numbers so that you can perhaps just call and be very clear with your private health insurer what the item numbers are that they're going to be claiming against to know whether your cover covers that. Now we were very effective in advocating to government in the changes to the private health insurance of the bronze silver gold that breast cancer is specifically identified in bronze but there are always loopholes. So what we do say is get all your item numbers together or you know what? Ask a friend to really help you in this or or a partner family member to ring and check in with all of those item numbers to really make sure you are covered. But the other thing I would say is at every point in your diagnosis consider public. Now my big bandwagon is radiation because this is what we found to be the greatest out-of-pocket costs outside of reconstruction in the State of the nation. What we know is there is very little transparency in radiation treatment if you are going privately. Now in some locations as a public patient you would be going to the same venue as you would if you're a private so you arrive and if you're a public patient thanks very much. No out-of-pocket costs here. Thank you. Sign this paper, we'll get the money back from Medicare and then someone also come forward to the desk have had exactly the same treatment. That'll be twenty seven thousand. Now it's outrageous. There is no transparency so BCNA will continue to work on that transparency side. But what I would say in radiation is always always consider going public. There are very few locations in Australia where there's a waiting time for radiation therapy. If anyone is listening who has been told there is a waiting time. Call that helpline but the capacity of the public system to deliver radiotherapy bulk billed is very good.

Kellie Curtain [00:18:47] Okay so how do you do that. Is that allowed. If you if you've started down the private health insurance route can you then. Toggle between the two. Can you have private surgery and then have public radiation?

Kellie Curtain [00:19:01] You sure can. And in fact you can also have public chemo so if you want you're very clear you want a surgeon who is going to make you feel comfortable and you know look how you look and feel for your body image is really important to you so therefore you've met a surgeon and you've looked at their results and you really clear. That's you want to go with and you want to pay their out-of-pocket costs. Great. Negotiate hard then you should consider iff you're having radiotherapy or chemo  being able to move to the public system and you can absolutely move between the two systems and the people who have done it don't regret it.

Kellie Curtain [00:19:42] So what are we talking about about saving? Like thousands and thousands?

Kirsten Pilatti [00:19:46] Thousands. And what I would say is what what we heard through State of the Nation is you know if someone was unaware that they could move between radiotherapy and that the thing that annoys people the most is when they don't know something until afterwards. And that's overwhelming for our members. So those people who didn't know I would say to them "so they didn't offer a public for radiotherapy?" they were like "no no they didn't". And then they'd kind of by this pause. "Well actually they did say something but they said ah where part of your team now. Well we're here for you for the whole journey". Well guess what? You'll also get great support in the public system as well. And you won't have those bills just coming in like to the letterbox and you having no warning about them.

AD [00:20:38] A breast cancer diagnosis comes with lots of questions. BCNA's help line is here to provide some of the answers. Staffed by trained cancer nurses help line can help you at any stage of your journey. Call the help line on 1 800 500 258

Kellie Curtain [00:20:56] Okay I can tell we could go on all day about this one with you but let's move it along and sort of talk about so even in the public system there are out-of-pocket costs and that's more as we move into the survivorship aspect. Yeah let's run through those and maybe some helpful hints on how to minimize those.

Kellie Curtain [00:21:18] So one of the out-of-pocket costs will be follow-up care. And what kind of tests that you want or that your team are asking you to do so. Currently we have been able to lobby government to include MRI but I am slightly worried that it's not going to include all people for follow up care. So currently people are paying for their scans if their MRI out-of-pocket that may continue but I can assure people we're still working through that. Obviously metastatic patients who you know I have so many additional costs and I know we've got a whole series for people living with metastatic disease but you know they have constant out-of-pocket costs for that but then you look at survivorship and I know people hate that word and when if anyone has an alternative to that word I want you to email me directly. But if you're living with post a diagnosis there are ongoing physical and emotional support that you need if you've been diagnosed with lymphoedema. So 20 percent currently of Australians who have been treated for breast cancer who've had axillary clearance have lymphoedema. You know we know that the sleeves for example currently in South Australia you have to pay fully for your lymphoedema sleeve but also the allied health program allows for you to have five meetings with specialists that are covered in bulk billed.

Kellie Curtain [00:23:00] A year.

Kirsten Pilatti [00:23:00] A year. Yeah but if you need to see an exercise physiologist a dietician and you have lymphoedema - good luck. You know people with severe and acute lymphoedema need to have five or six sessions in a month when they have an episode. So I think that you know it's not enough. We've called for a doubling of that but there are the costs that keep coming up physios constantly having out-of-pocket costs. So what you know what I would say to people is look into services in your local area that may bulk bill but also go to your GP and make the best use of your allied health if you want emotional support. Don't use your allied health five sessions for that. Ask for a mental health plan and you know that's another thing that's really hard for people to ask and like hang on I just want some support. I'm not, you know, needing a mental health plan but actually we've got to make the most of the programs and services that are available for government so don't be afraid to do that so you get 10 sessions from that. So don't use any of your Allied health GP plan for mental health. Get the mental health plan for that so you get 10 a year through your GP and five through allied health so the GP is central to these. They will put you onto those plans and if you do not have a good GP. Find one.

Kellie Curtain [00:24:27] Because it should be noted that once you into survivorship you go back to the GP. So you finished with this specialized care and your GP once again becomes that central point. And like you said to have a good one can be the difference between knowing what's out there to work for you and you ending up paying a lot of money.

Kirsten Pilatti [00:24:51] Yeah. And ask them to be bulk billed. Just ask everyone to be bulk billed. That's the most important question. The most important thing you can say at every appointment.

Kellie Curtain [00:25:02] And what's the worst thing they can say? No?

Kirsten Pilatti [00:25:05] Correct. And then you find someone else.

Kellie Curtain [00:25:08] Okay so maybe another word of advice might be to get an insurance expert to look at any insurance policies that you have. So above private health insurance we're talking about life insurance income protection all those sort of things how can they help?

Kirsten Pilatti [00:25:31] So what we have found and like everyday I hear another amazing story about people really looking into their insurance. I mean in Australia quite often people are heavily insured and you know post a diagnosis your insurance becomes much more complex. So this is about people who have insurance plans in place before they're diagnosed. Get someone who's an expert. You know people always say What can I do to help. Well if someone's a financial planner I give them all of your insurance paperwork and say can you find anything in here that's going to help me deal with the financial impact of breast cancer. So just the other day a woman with metastatic disease found in her policy that she was actually a drug that she wanted. That that is not on the PBS. Her insurance company through a loophole is going to have to pay for her treatment. Yeah it's absolutely fantastic. But unless someone who knew what they were looking for was looking at that policy right who the detail of those policy.

Kellie Curtain [00:26:41] They're mind blowing. They're mind blowing. So really it really does need the eye of someone who knows what to look for.

Kirsten Pilatti [00:26:47] Yeah. And of course the Cancer Council in each state and territory provide financial support as well. It is means tested but it's worth it if you need financial support to access that program and many people don't know about that. So I would encourage people to do that. But if you've got someone in your network someone in your school community or you know everyone wants to help and that's a very practical thing you can ask someone who might be a financial planner to say hey here's all my paperwork. Find how I can maximize what I've been paying thousands of dollars for for all of my life.

Kellie Curtain [00:27:25] Just finally. We obviously when people are diagnosed and have to have treatment quite often that means not working. Yeah that's costly too.

Kirsten Pilatti [00:27:36] Yeah. I mean we did a financial survey back in into 2016. What we found was that 25 percent of our membership had out-of-pocket costs more than twenty five thousand dollars. Most of those with reconstruction radiation. But what we didn't calculate was the impact of work and breast cancer. I think what I've seen over the 13 years has changed significantly is when people were diagnosed 13 years ago they just stopped work and had time off now. No one can financially afford for the second person to stop working so that's why the insurance has become really important. That's why finding all of your legal rights as a work person with cancer is really important and I would encourage people to watch our work and breast cancer webcasts which really cover some of those aspects and challenges for people. But we do know from our survey that 99.9% of families never returned to their total household income post a diagnosis. Now sometimes that's because people review their kind of life and they're like well I don't want to go back to that workplace and I don't really like anyone there and you know that's totally fine. But sometimes it's because cognitive issues which are not just during treatment but a long term post chemo treatment really can impact your ability to work. So on the work stuff I'd encourage people to watch our webcasts on work and breast cancer and look at our BCNA work and breast cancer hub which has incredible support not just for employees but employers and really importantly the unsung heroes I reckon in the work are the people who have their own businesses because they have a whole lot of different challenges after diagnosis.

Kellie Curtain [00:29:37] I need you to take a breath now. It's always a hot topic, out-of-pocket costs. So KP thank you for joining us on Upfront which is a proud production of Breast Cancer Network Australia. This episode is proudly supported by the Dry July Foundation. If you have any concerns or queries please contact your health professional. We'd love to know your thoughts to send us a message on social media or leave a review on Apple Podcasts. It helps other people find us. For more information on BCNA  and the resources we've talked about in this podcast. Visit BCNA org dot A-U. I'm Kellie Curtain. Thanks for being Upfront with us.