To investigate expenditure on PD research as a platform for advocacy is to sink immediately into a sea of complications.
The US is possibly the most transparent jurisdiction in the world on medical spending, so let’s start with US spending on PD research. In 2017 it was $177m, with a reduction to $169m in prospect for thIs year. However, US Budgets are a moveable feast agreed after the event, so only history will tell us this number. The full statistics are in the US National Institute of Health (NIH) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) [Note: Excel download]
The first complication is topicality. The NIH is required to produce annual figures. In contrast UK authorities publish 5-yearly reviews. In 2014 £171M was spent on Neurological Research in the UK. There is no published PD number even though the data must exist. Needless to say the category headings are different from the US. The full report is at http://www.ukcrc.org/wp-content/uploads/2015/08/UKCRCHealthResearchAnalysis2014-WEB.pdf This is sufficient to make the point; I have not even tried to look at other countries or languages.
This report is well written and worthwhile dipping into for a good discussion of health spending issues. However, with “discussion” comes the second complication, the agenda of the publisher.
The third complication is category, because expenditures listed in this manner are not commutative. This warning is seen in both the US and UK statistics. It means one study expenditure can be duplicated in multiple categories. Conversely, the categories do not allow for cross-fertilisation, examples of which are the contribution of the Diabetes UK Charity to spend in metabolic and endocrine disease and of Alzheimer’s UK-sponsored research to the knowledge of brain function and structure.
The fourth complication is that categories tell you nothing about the research activity that is being pursued in the expenditure. It could be in aetiology (aka basic research), treatment development or disease management, to name but three. Furthermore it is here that the source data is most likely to be compromised if not deliberately obscured for strategic, commercial or reputational reasons.
So, where does this take us? Clearly some numbers in the US data will be useful as sound bites, as sticks to beat drums with. The published data does not take us anywhere near a global view. In view of the market dominance of US Pharma, an extrapolation of US data to a global position might be valid. However, this could not allow for the extent of government expenditure in other countries and the direction of that spending. It is therefore very unlikely that we could present a coherent global argument about the insufficient or unfair allocation of PD expenditure on the published data. It simply doesn’t tell you what is actually happening.
Can history teach us anything? The HIV/AIDS situation was and remains very different. Its salient characteristics, IMHO, are that it got off the ground first in the US, arguably because of the scale of the problem and cultural dispositions. Secondly, setting aside the tactics employed, the outcome was a (lot) more money spent, and still being spent. The key question is – where did that money come from? Was it new money put in by Pharma (for example) or was it by re-direction of funds from elsewhere?
Does the PwP community want to build a case by justifying additional spending on the basis of (for example) the cost to society, or does it argue for a re-distributrion of existing funds, or does it simply get in everyone’s face until meaningful stop, repair or cure treatments emerge? In these contexts and on a national level the numbers can become useful.
20th August 2018