In response to parliamentary question, the Department of Health has confirmed the (dire) current level of funding for research relating to Down syndrome.
In reply to a question tabled by Fiona Bruce MP, the Department of Health confirmed that current annual spending on Down syndrome research totals £1.76 million ($2.7 million):
“In 2012-13, the Department’s National Institute for Health Research (NIHR) spent £1.2 million on research relating to Down’s syndrome through research programmes and research training awards. Total spend by the NIHR on research relating to Down’s syndrome is higher than this because expenditure by the NIHR Clinical Research Network (CRN) on this topic cannot be disaggregated from total CRN expenditure.
“The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. It is an independent research funding body which receives its grant in aid from the Department for Business, Innovation and Skills. In 2012-13 the MRC spent £564,000 on research into Down’s syndrome.”
However, the NIHR funding is not directed towards improving the health and wellbeing of people living with Down syndrome – this is directed at a major project to “to improve the quality of NHS prenatal diagnostic services by evaluating early non-invasive prenatal diagnosis”. Most of MRC’s spending is on the study of a mouse bred to carry (much, but not all of) a human chromosome 21 in (many, but not all) of its cells. While of interest, this research offers no near-term improvements to health and medical care for people living with Down syndrome today. Yet there are many pressing clinical issues where more research could quite quickly improve the lives of people with Down syndrome – sleep, hearing and speech and language therapy to name just three.
This compares poorly with the $20 million spent annually by the US National Institutes of Health on Down syndrome research. The US figures do not include expenditure on research into prenatal testing. Therefore, compared on a population basis, the UK is spending around £14 ($22) on Down syndrome medical research per person with Down syndrome annually, whereas the US is spending around $80 per person (there are approximately 40,000 people with Down syndrome living in the UK and 250,000 living in the US).
Furthermore, the US government also funds research aiming to improve educational outcomes for children with Down syndrome, and the UK government currently funds none.
This is a sorry state of affairs that I hope the All Party Parliamentary Group on Down Syndrome will be tackling in the coming months.