The world spends more than US$240bn every year on biomedical research and development. For pharmaceutical companies, who spend more than US$145bn each year, the motivation is clear: the development of new treatments that can ensure future revenue. For governments and charities (who provide the other 30% and 10% of public research and development (R&D), respectively), the justifications are more complicated. They certainly help support industrial innovation, but their stated priority is normally to address real health needs. With investments on this scale, we should ask where they are directed and who is really benefitting.
In many areas of science, asking “who benefits?” is complicated. The links between funding and outcome are hazy. Health research is clearer, as much of the research is defined by disease area and the World Health Organisation has statistics on the actual burdens of these diseases, measured in disability adjusted life years (DALYs) (years of life lost due to death or disability caused by a disease).
Is public research addressing the most pressing national or global health problems? Not according to studies published this week by Nature Index and La Caixa Foundation. The Nature Index study, of which one of us was co-author, shows for the first time the surprising similarities between public and private R&D priorities in health. Big pharma R&D and public research both appear to focus on some diseases that are prevalent in high income countries, such as cancer or skin diseases, leaving other areas relatively under-invested.
These studies connected the percentage of publications focused on certain disease areas to the percentage of the total disease burden in high-income countries and worldwide. The graph below shows the mismatch between scientific priorities and health needs. While the data is based on broad estimates, the findings are consistent with previous studies using NIH funding data from the US and worldwide publications data.
Percentage of publications worldwide (dark blue) and by big pharma (light blue) compared to percentage of disease burden in high income countries (pink) and worldwide (red) for selected disease areas. Publication data is from Web of Science database for 2009-2013. Disease burden data is based on WHO estimates for 2012. Source: Yegros et al. (2018), Nature Index. Illustration: Ismael Rafols
The disease burden in low-income countries for infectious and parasitic diseases such as malaria or tuberculosis remains very high, but global R&D is still modest. Pharma companies have the excuse that these diseases represent a small share of drug markets. This doesn’t explain why public sector R&D should follow the same pattern. The fact that the vast majority of global science is conducted in rich countries seems to be causing neglect of global health problems.
The distribution of resources across high-income disease areas is also questionable. Diseases such as stroke, depression or chronic pulmonary disease also receive little investment in comparison to their health toll in both low and high-income countries. It is striking how similar the distribution of private sector publications is to that of universities and public research organisations (with a few exceptions such as diabetes).
It seems that public R&D is following rather than counterbalancing pharmaceutical research agendas. We can make some guesses on why this might be. First, researchers in public labs may also receive private funding that is related to market for a disease and the likelihood that the disease can be treated using a conventional biomedical business model. Second, notions of healthcare are still dominated by drug-centred therapeutic approaches rather than improving lifestyle and promoting healthier environments. And, third, in many countries the narrative of 21st century science is increasingly tied to economic needs (often seen as national priorities) rather than fostering wellbeing. The problem is not just in how problems are chosen but also with how solutions are designed. Market forces cause an over-emphasis on certain diseases and on pharmaceutical solutions rather than preventative public health approaches.
We need to be more honest about who really benefits from global biomedical science. If funders want to, as they claim, use global science for global health, we need to talk about the current mismatch. Organisations such as the Gates Foundation, the Drugs for Neglected Diseases Initiative and the European and Developing Countries Clinical Trials Partnership have gone some way towards redressing the balance. New public initiatives now need to play their part. In the UK, the Global Challenges Research Fund is an opportunity, but this too runs the risk of copying rather than counterbalancing market priorities.
Setting new priorities requires listening to real health needs, in both poor and rich countries. Patient groups, medical doctors, nurses, and other health professionals should be involved in setting R&D priorities, assessing new treatments and designing solutions. The Priority Setting Partnerships of the James Lind Alliance offer a model to follow. But tackling the vast inequalities in global health will require substantial political effort as well as good science.