The most common cost mentioned by people with severe asthma was asthma medicines, which participants perceived to be expensive. The main other cost was visits to doctors. Australian research shows that cost is a significant factor in people’s decisions about asthma medicines [Davis et al 2019]. People with severe asthma talked about what out-of-pocket costs needed to be met, and the balance between the cost of their medicines and achieving their best possible lifestyle.
There was a range of situations regarding payment for medicines overall. Most people with severe asthma received some kind of assistance, be it a healthcare card (for example if they had an aged or disability pension) that would reduce the cost of prescriptions by up to 85%, or reaching the Medicare safety net, which would reduce the cost of prescriptions for the rest of the calendar year. Biologic therapies for severe asthma are heavily subsidised by the government for people who meet certain criteria. However, even though individual medicines were inexpensive, people with severe asthma were often prescribed several different asthma medicines, which added up. In addition, some medicines were necessary to deal with side effects of asthma medicines, such as Vitamin D and calcium when on oral steroid tablets. Some participants were fully aware that it would be a different story if they had to pay the full price of the medicines.
Clive would not be able to afford the full price of the biologic therapy.
> Click here to view the transcript
If I had to pay the full $1685 a month for the Nucala, that would be huge issue in fact, I couldn’t – I couldn’t use it. I can’t afford $20,000 a year or whatever happens to be. But all together you know, I don’t know, I pay on drugs a year, might be a grand or two [$1-2,000] and you know, to keep- to keep it at bay. I think it’s probably not such a bad thing you know.
Shannon finds it hard to afford her medicines and has had to ask her mother for help to pay.
> Click here to view the transcript
We go without. You know I mean? I know what I’ve gotta do and what I don’t have to do and it’s just, yeah it’s hard. It is, it is hard because by the time you’ve put your rent away, by the time you pay your phone, the electricity and all that. Yeah but I um, I must admit if I haven’t got the money, Mom, she’ll help me out and she’ll get my tablets for me so it’s all good that way. Yeah.
Not all participants were able to access concessional rates for medicines. Some continued to work, noting that workers compensation wasn’t going to pay, or they had private health insurance or had cashed in their superannuation. It should be noted that in Australia almost all medicines are subsidised by the Australian government to a maximum of $40.30 per prescription, and that for patients on a low income, there is an additional subsidy down to $6.50 per prescription.
For
Tony the cost of medicines has added up over time.
> Click here to view the transcript
And yeah, financially it’s cost me a lot of money, because I spent so much money on medicines over the years. I’m 65 now, I don’t get the cheap- the cheap medications. If I’ve got good super, I’m a self-funded retiree. I’ve worked hard all my life, and my wife has too. We don’t get any sort of government chemist rebates. We’re still paying the full price there. And I buy a lot of medications. So it’s very severe you know, that way as far as medications go.
Participants found that the price of their reliever inhalers varied depending on the type of pharmacy they went to, and that preventer inhalers were more expensive than relievers. Preventer affordability also depended on how the medicine was prescribed, that is how many puffs and what strength. However, it was not just the medicines themselves that people with severe asthma had to pay for. There could be other items such as nebulisers, filters and masks, and these needed to be changed regularly. One participant had purchased an air purifier which cost $2500.
Michael explains about price variation for reliever inhalers.
> Click here to view the transcript
Ventolin varies quite a lot. If you can find a discount chemist… can I name the price of… there’s a chemist in my local suburbs, a discount chemist, Ventolin is six dollars. Ventolin at a local smaller chemist is ten dollars. Ventolin in South Australia where I go to see family, is sixteen dollars, so I know if I’m going interstate, I’ll stock up with Ventolin if I’m going to be there for any period of time.
Lauren has taken healthcare providers to task over the cost per dose of her inhalers.
> Click here to view the transcript
So my current preventative puffer is 120 doses, which obviously you take morning and night, so it last 60 days only. So, yeah, like two months. My doctor recently recommended that I try a different one, which I would only have to take once a day, which is great, but that was only 30 doses. So, one month and it costs the same. So I was pretty annoyed actually when I found out that it was only 30 doses and I paid the same for them. Because even before, like, I go to the pharmacist, I was, like, “I’d be given this script, like, should I try it?” And they were like, “Yeah, like, it costs the same, like, blah, blah, blah.” And obviously, it doesn’t cost the same per dose. So, yeah, like, I feel like Ventolin is fine price wise, like, that’s kind of the main thing that I’ve obviously have to do. But yeah, like, the added cost of having to do, like, preventative puff right on top of that. And then on top of that, okay, you’re supposed to just have a stash of prednisone, like, ready to go. And then also, like, if my asthma escalate, it’s like on my action plan, I’m supposed to start using, like, Flixotide or something like that before you go to prednisone, so that’s another puffer that you’ll need to have, like on top of everything else.
Australian research suggests that doctors do not discuss cost of asthma medicines with their patients. People in this study had varying experiences in this regard. Some found their specialist actually considered medicine cost, but others were critical of healthcare providers’ knowledge and practice in this area:
Justin was pleased with his specialist’s knowledge about costs.
> Click here to view the transcript
But he’s very good. He explains how the drugs work. He explains the difference between the drugs. He explains why he’s not recommending this drug, and he explains why this drug is better than that one. He even considers the cost of it, and which I found amazing. The last visit he said, “If we need to, we can do without this one and this one, but you’re doing very well, so I prefer not to, but if you can’t afford it we can cut these two out,” which I think is amazing. No doctor has ever done that, so I’m really pleased with that. I can’t fault the service.
Lauren doesn’t think healthcare providers think about the cost implications.
> Click here to view the transcript
It almost feels like the doctor and the pharmacist, like, don’t think about these things, because obviously they don’t. Cost comes into my decision making, but I don’t feel like I would discuss it with my doctor because I don’t feel like he would really understand. I feel like his advice back to me would be like, “Well, too bad, like that’s what they cost, so just that’s what they cost.” So I feel like I wouldn’t get anything out of trying to bring that up with him.
People with severe asthma sometimes found themselves having to decide whether they could afford their medicines with the money available to them. For some that meant choosing between different types of medicine and considering not filling their asthma medicine script. Others felt they would always find a way to afford their asthma medicine as it improved their quality of life. Some people we interviewed felt guilty spending money on medicines rather than other items. Some pharmacies had organised an account so the person with severe asthma could pay as they were able. People we talked to also mentioned that their ability to pay varied across time; for example things were more difficult when their children were young.
Jemma has had to think about which medicines to go without.
> Click here to view the transcript
But no, I mean if it wasn’t for the Safety Net* system, I wouldn’t be able to afford my pills and I have to say OK well this I can live without, this I can’t. And I’ve already done that. So in actual fact you know let’s start being, well OK this will actually stop me breathing so I better take this. You know if I don’t take this I’ll stop breathing. But I can come off of that one because that just controls pain. So you do get to thinking that way.
Diana felt guilty spending money on medicine.
> Click here to view the transcript
I do have my pension helps with the costs of medication now. But previous to that, years ago I remember thinking, my God, it was really tough, you know. When we bought our house, we had a mortgage and we were paying 18% [interest]. And that was tough, buying medication and everything else, and having a mortgage of 18%. Yeah. But we did it, you know? I always felt a bit guilty spending money on medication, because you sort of think, well, so many other things I could have done, you know. But anyway you’ve got to do it, otherwise you don’t do anything.
Lauren isn’t convinced her quality of life is worth twice the medicine cost.
> Click here to view the transcript
And maybe it’s even, like, the two month one is maybe not the best because I actually did feel like my asthma was good for those 30 days, but it wasn’t good enough for me to, like, pay double for it for, like, the– I don’t know. And I feel like maybe that’s not the right choice to make, but at the moment, like, I just can’t, like, justify the cost– in my mind. But yeah.
Jemma appreciates paying the charges off as she is able.
> Click here to view the transcript
And my chemist gives me an account so I can pay off as I’m able to. Because I wouldn’t be able to otherwise. Because every time we pay it off it seems to get more on it and it does for the time up until you get to the safety net. And then of course it’s zero for most of the medications and you just pay for things like magnesium and my diabetics and things. But basically the rest is covered. So, yeah, I wouldn’t be able to if the chemist didn’t bill me rather than charge me each month, or whatever. So he’s quite happy for me to pay it off if I want, so if that’s $20 a pay, that’s what it is.
There were other costs apart from medicines for people with severe asthma such as visits to doctors, and services provided in the person’s home such as cleaning. As people with severe asthma often have lots of issues to discuss, they may have to pay for longer consultations with doctors. Some people were paying a great deal to see their specialist, but others had discovered that to see a specialist in a hospital clinic was free including any tests needed.
> Click here to view the transcript
I think the main problem now with doctors and specialist is that you don’t always get time. There’s a sign up in my GP practice saying that your appointment time is between six and eight minutes, so if I’m just going in to get a prescription written out, well that’s fine, but if you’ve got a complication you need to extend that and you’ve got to book for a double visit, and that for a lot of people can be quite costly.
Marion attends a free clinic now.
> Click here to view the transcript
I used to see doctor [name] in his rooms [private practice office], which was expensive. So I’m very happy to be seeing doctor [name] in the clinic, which is free. And you know, he sent me for any other lung function tests and, you know, bronchoscopies and nerve conduction tests and everything else at the hospital. So that’s all done free, which I’m very grateful.
* The Safety Net is a yearly threshold which when reached means that concession card holders receive any further medicines at no cost.
References:
- Davis SR, Tudball J, Flynn A, Lembke K, Zwar N, Reddel HK. “You’ve got to breathe, you know” – asthma patients and carers’ perceptions around purchase and use of asthma preventer medicines. Aust N Z J Public Health. 2019.
