Affording Access

In negotiating this uneven, overlapping and rapidly evolving terrain of clinical practice and precision innovation, we are presented with a wide range of challenges that defy easy categorisation or attribution to single causes. One junior oncologist we interviewed provided a particularly compelling account of the intersecting difficulties of the new space of precision cancer care, highlighting challenges of funding, access, actionability and how these play out under the daily time pressures of clinical practice:

TRAINEE ONCOLOGIST #5: I mean, to take it a step back from - even some of the testing and stuff has to be funded by patients, so there’s a commercial side to that, which automatically then selects patients that are able to afford that and also who are generally more well-informed about those options, which already slants things in a biased way. And then there’s the issues of trials and funding and drug companies. I mean, yeah, drug companies will always pay for things that are going to make them money. So it’s hard. Sometimes the research and knowledge base is a bit slanted as well in that regard. But, I mean, we can only do with the knowledge that we have, and surely there’s some benefits to the drug companies investing in these trials, because then we get more availability of treatments. But yeah, access to patients is the more day-to-day issue that we face, and, yeah, [full genome] testing and getting that organised for patients, having those discussions about self-funding, and then what we do with the results as well is tricky, in Australia especially. Because even if there are mutations detected, even if there’s a drug that exists that targets that mutation, it might not be available on the PBS [Pharmaceutical Benefits Scheme], And so then you’ve got to have a whole other conversation about funding that, which is complex and expensive for patients. And so everyone walks in the door saying, ‘Oh yeah, I want to know my whole genetic make-up of my tumour.’ But the implications of having that information and the fiow-on effects is still very complicated ... And having those big conversations with patients is really difficult because, one, I don’t think we’re very good at discussing money, because that’s not where we come from. We’re here to help patients, and it’s hard when you’re restricted by them having to find things themselves.

FOCUS-GROUP CONVENER: So how do you guide that conversation?

TRAINEE ONCOLOGIST #5: Yeah, with a lot of difficulty and not enough time ... I think, to be honest, we often just don’t have that conversation, because there’s not enough time, and you also think that maybe if they’re not bringing it up, then they might not have the funds to pay for it. And those sorts of assumptions get made. Yeah.

Amidst a wide range of issues brought up by this detailed account of the complexities of practice, the issue of cost and access is a central one, and one that clinicians returned to repeatedly. Often it was nurses who were most in touch with patients’ financial situations and the consequences of financing treatments. The following example captures some of the relational choreography of access across families and resources, and the affective dynamics of guilt, burden, privilege and discomfort that can surround it. Discussing the phenomenon of ‘self-funding’ treatments - in this instance, an immunotherapy that is not yet provided in Australia through the PBS - a cancer care nurse told us:

NURSE #1: It’s really hard. And I was put in a really awkward position. I had a patient, and his family was self-funding his immunotherapy, but they didn’t want him to know about it because if he knew about it, he would have said no because he didn’t want to be a burden. So then it was like having these awkward conversations, where it’s like - I remember one day the registrar] has changed and the reg was like, ‘Oh, so how are you paying for the thing?’ and it was like the whole room just kind of dropped. Yeah, I didn’t really feel comfortable in the sense that it’s like being, not dishonest, but just having to be secretive about it. But then I also understand his family could afford it and they wanted to give him the best chance. So yeah, it was just a bit weird. Yeah.

NURSE #5: SI6,000, S20.000 a cycle and it could go for months - It’s just, you understand why they’re doing it, but sometimes you just think, ‘Oh, is it really that good of a chance?’ and, ‘What are their families going to be left...?’ I think it just becomes like this whole big -

NURSE #1: It’s heartbreaking.

NURSE #5: It is.

NURSE #3: And most of our patients are not particularly well-off and don’t come from well-off families. I think it’s the exception where you get a family that can [self-fund] ... It’s few and far between that they come through that they can actually afford it. So it doesn’t feel good, actually, knowing that they’re struggling to pay for things.

While instances of families covertly funding expensive treatment were not common, some of the same relational difficulties, discomforts and silences were nonetheless pervasive. As trainee oncologist #5 mentioned above, often the prohibitive cost of such treatments meant that they weren’t discussed in consultations between patients and oncologists, remaining silenced both within the therapeutic encounter and often also beyond it. This experience was recounted by Dean, a patient in his forties and living with neuroendocrine cancer, in the following way:

DEAN: Like straight after surgery' I didn’t get enough information straightaway. Now I’ve got a fair bit more, and that’s because I’ve been able to or well enough to do a lot of reading to learn more. It’s always interesting now to go back to the doctor and go, ‘Right, I’ve read about this medication, this medication, this medication’, and they’ll go, ‘Yep, you can do that. That will be $4,000 a month, that will be $5,000 a month, that will be S10,000 a month, that will be $27,000 a month’, and you just go, ‘Okay, so that’s why' you haven’t mentioned them, because they’re not covered by PBS.’ [Treating oncologist] was right, and that is that the drug that I’m on ... that’s currently' being effective even though these other drags, when you read the scientific reports on them, would appear to be even better, they’re just not currently covered because they’re newer. So I understand his thing is like, ‘Well, do you have enough money to go broke or don’t you?’ The fact is, I don’t have enough money to go and spend $27,000 a month.

The prohibitive cost of these drugs represents an insunnountable barrier for many in accessing the fruits of therapeutic innovation. Yet beyond the question of cost, they also raise a wide range of questions around value more generally: what is the value of these therapies, to whom, and in what ways? What is excluded in the ongoing drive towards precision, and why do we continue, full throttle, in this direction, seemingly at any cost?

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