Thread by @andiyarus

Read in the SMH (smh.com.au/politics/feder…) that @GregHuntMP is about to announce funding for CAR-T cell subsidised therapy in Australia. Some thoughts about this (& economic justice for palliative care patients): a thread 1/

Firstly, cancer is scary. That’s not a rocket-science statement, it’s a bleeding obvious. When we experience a huge diagnosis, it’s a massive upheaval in life - and one that (most) people would do anything, pay anything, to make go away. 2/

What happens though for those patients that don’t have curable disease? Setting aside the non-malignant palliative care patients for a moment - there are always a percentage of people who won’t or can’t get better with current therapy, although often not for a lack of trying. 3/

There’s always palliative chemotherapy and radiation therapy - where the goal is symptom control, quality prolong, maybe a bit more time although the ability for people to differentiate between that and curative therapy is often hard (10.1089/jp,.2018.0651) 4/

What happens though when there’s “no more”? When there’s “no fight left”? (Please note these are not attitudes I share or like, but they are reasonably commonly seen. 5/

This is where palliative care clinicians come in. Hopefully it happens before this (there is good evidence we help improve patient's quality of life, and sketchy evidence about life extension blah). At any rate, patients are often referred to their friendly pall care team. 6/

Here are where the injustice issues re economics start to be more visible… tales of patients spending thousands on therapies (private, non-approved, etc). Thousands of dollars in fees. Paying for hospital parking. Significant issues re: loss of income for carers & families. 7/

Then we come to the end of life. Research (often cited) states that the majority of people wish to die at home (although I often wonder what would be the answer if patients who were approaching the end of life were asked this question… not people much earlier in their life. 8/

End of life care exacerbates many of the above costs. Patients often require equipment (hopefully subsidised). Families are expected to shoulder the burden of care - it is very rare for around-the-clock care to be provided. It is simply too expensive. Then there’s medications. 9/

Patients at the end of life will typically (in Aus context) be prescribed medications, as rescue, as regular, or both. Opioids, for pain & breathlessness. Benzodiazepines, for relaxation & agitation. Antipsychotics, for nausea & agitation. Anticholinergics, for secretions 10/

These above medications are NOT all subsidised on the PBS. Particularly of note are benzodiazepines. In NSW where I practice, midazolam is the commonest benzo prescribed at end of life (EOL). Comes in a box of 10 ampoules, and the sticker price is anywhere from $30-$60. 11/

The only one of these medications with a specific palliative care PBS authority is Buscopan, which allows multiple boxes on one script. 12/

Back in May 2019 I did some rough sums and worked out the medication cost for a patient requiring low-doses of these meds, with a couple of extras a day for comfort. Nothing high dose, nothing extravagant. For ref, assumed daily syringe driver and subcut breakthrough x 2/24hr 13/

The cost per day of these medications, assuming very low doses, starts at around $45/day. Any doses increases, this goes up. Multiple changes, this goes up. Multiple medications, this goes up. 14/

I saw a patient at home last year who was using over $150/day of medication in his syringe driver alone. On an aged pension, with children having stopped work. He had a drug cupboard full of prior medication that was there from before. The sunk cost, and ongoing, were huge. 15/

So what does this have to do with @GregHuntMP and CAR-T cells? It always comes back to funding, doesn't it? 16/

That article reports approximately 200-250 uses of CAR-T cell therapy in Australia yearly, at a rough cost of $500,000 per patient per year. That's up to $125 million per annum on this therapy. 17/

For patients at home, at the end of life, that equates to fully subsidising about 1,000,000 people's medication, annually. To let them die at home. 18/

Now, there aren't 1,000,000 deaths at home in Australia annually! Or even deaths. The best data I can find is that less than 20% of Australians die at home; around 170,000 of us die annually. That's around 34,000 deaths at home on the upper end. 19/

If the @healthgovau can find enough money in the budget to fund 250 individuals with highly refractory haematological malignancies to receive CAR-T cell therapy, at the cost of 125 million annually... 20/

What about some of the most vulnerable patients of all?

Thanks for reading. 21/end

And because I forgot to tag, #palliativecare, #pallanz, @PCACEO, @ANZSPM , @PallCareNSW

Also @Bowenchris