Every so often I see a crowd funding campaign for medical care that isn’t covered by Medicare (in Australia) or the NHS (in England). Sometimes it’s for an experimental treatment, other times it’s for alternative therapy, and occasionally it’s something that is established but not covered in the country in question. I suspect it’s not clear to most people how it’s decided what does and doesn’t get covered by Medicare, and maybe an explanation will help people decide if and when to support campaigns like these.
There are three main reasons that a particular treatment or medical service wouldn’t be on Medicare – 1) we don’t know if it if works yet, 2) we’re quite sure that it doesn’t work, 3) it works but the government considers it too expensive for the benefits it has.
Category 1 contains things like experimental drugs that haven’t yet been approved by the TGA (Australia’s version of the FDA). These are drugs that might be in early clinical trials, but maybe the person running the funding campaign hasn’t been able to participate in a trial in Australia for whatever reason. A lot of drugs don’t make it past early clinical trials because they turn out not to work or because they have unacceptable harms, but some do. I can see why someone with a life threatening illness would be willing to try experimental therapies if they had exhausted all of their other options. At the same time, there are (sometimes unknown and unquanitified) risks involved in taking experimental medicines, and the costs can be substantial. I guess this is one of those difficult case-by-case kinds of decisions.
Category 2 is things like homeopathic “treatment” for breast cancer. There’s no evidence that these therapies work, which is why they are not subsidised by Medicare. People who take these therapies instead of medical treatment that is known to work are putting themselves at high risk of progressing to invasive forms of cancer that may kill them. I personally wouldn’t support a campaign like this, and if it were being run by someone I knew I would try very hard to convince them to talk to their doctors about their genuine treatment options. Some forms of cancer are amenable to surgery, radiotherapy and/or hormone treatment if a patient doesn’t want chemotherapy. Some people with types of cancer that are very likely to be fatal even with treatment might chose not to have any treatment, and that’s their right – the treatment isn’t always worth it. But someone who does want treatment shouldn’t be turning to homeopathy.
Category 3 is things that are known to work but are beyond what’s called the government’s “willingness to pay threshold” for the benefits they provide. The government has a cut off point where it won’t pay beyond a certain amount for a given improvement in quality or quantity of life – for instance a chemo drug that gave you an average extra two weeks to live at a cost of $40,000 wouldn’t be approved. There are some more borderline cases though, where some people might have good reason to pay for treatments privately – some people are currently doing this with HIV preventative therapy, which hasn’t been added to the PBS yet (but hopefully will be at some point – it works brilliantly, it’s just pricey). I saw one gofundme for a specific type of prosthetic which is unusual and might have limited utility for the average (old) amputee, but would have given the young guy raising funds for it big improvements in his quality of life, and I contributed to that.
The government’s willingness to pay is based on the average patient – for younger people in particular, a 1 in 1,000 chance of remission might be worth $100,000, even if it probably isn’t worth it for a seventy year old. For a young parent with cancer, an extra couple of years of life on chemo that they could spend with their kids might be worth almost any amount of money, but for an eighty year old with dementia, the same might not be true. Reductions in quality of life due to the treatment itself are taken into account in these calculations, as well as just increase in the length of life. So, for example, a drug that gives you a good chance of living a lot longer with a high quality of life is more likely to be subsidised than a drug that does the same thing, but with a much lower quality of life due to side effects.
There are some therapies that the government won’t pay for but an individual might, and in some cases I can fully support that. However, particularly in the case of life-threatening illnesses, there’s a risk that desperation will drive people into financial ruin for a moon shot. Even people whose treatments are on Medicare can end up having chemo they really shouldn’t, because their doctors dodge the hard conversations about time frames, harms, and benefits. Some forms of cancer are almost universally fatal, and it’s only ever a question of six months without treatment or two years with. That is a hard conversation for doctors to have, and a much harder one for patients – so the conversation happens in vague terms instead of specific ones, and people often walk away with a very optimistic idea of the best-case scenario with their treatment. This is awful enough even when the government pays, if it means that people accept terrible side effects without realising it’s only buying them an extra few months instead of chance at remission and living to be eighty. But it’s a catastrophe if, as well as that, it drives a family into financial ruin for a promise of something that was never going to be possible.(I urge you, if you are ever making these kinds of decisions, to ask your doctor for specific details about probable survival times with and without treatment. Being Mortal by Atul Gawande is a good book on these issues that everybody should read *before* they come face to face with them).
These are hard decisions to make. The person running the funding campaign often won’t know which of these categories the therapy they want falls into – for example people who believe in homeopathy will think it’s not on the PBS because the government are mistaken about its benefits, rather than because it doesn’t work. Someone who wants a therapy in the first or the third category might not realise the risks or the harms involved in taking it, in addition to the cost. I very rarely contribute to these kinds of campaigns unless I can see, like the case of the new prosthetic, that there’s very likely to be a substantial gain for the money put in. Whether you do is your choice, though I’d urge you not to encourage people seeking homeopathic therapy for highly treatable but potentially fatal conditions like breast cancer.
I should note that none of this is relevant when the campaign is to support costs of living, rather than treatment itself. A severe illness that results in an inability to work can impose severe financial hardship on people, and we don’t have particularly good systems for dealing with that in Australia. It also doesn’t apply to people who live in Australia or England but eligible to access the public health system, or to people who live in countries with more limited public health systems. These issues are specific to treatments for Australian citizens or permanent residents. I hope it was helpful.