The latest figures on R&D funding for neglected diseases show the EU is making its greatest contribution to date. But looking at the big picture it’s clear more needs to be done to tackle diseases that affect millions of people around the world
MEP Maria Da Graça Carvalho. Photo: Michel Christen
Around two billion people - roughly four times the population of the EU - continue to need treatment for poverty-related and neglected diseases, such as malaria, trachoma and leprosy.
They may be regarded as diseases of the past but, in reality, they continue to affect large numbers of people. They still feature on the EU’s agenda, with the recently published Global Health Strategy acknowledging the heavy burden these diseases pose on many countries.
The EU hit its highest level of funding for basic research and product development in 2021, according to the latest data from Policy Cures Research. While this is to be celebrated, it equates to only 5% of total funding globally; a reminder that we have some way to go in terms of matching our words with actions.
Sleeping sickness, one of the diseases in the World Health Organisation's list of 20 neglected tropical diseases, is caused by a parasite spread via the bites of an infected Tsetse fly. Left untreated, sleeping sickness is usually fatal, and the only treatment available for decades is an arsenic derivative that of itself kills 1 in 20 patients.
The Drugs for Neglected Diseases initiative, a not-for-profit product development partnership, is changing the game, with the long overdue elimination of sleeping sickness now seeming increasingly feasible.
But at the same time, there are around 200 million cases of malaria each year, and the first-ever vaccine, which took over thirty years to develop, has only partial efficacy, while other neglected diseases still do not have an effective point-of-care diagnostic, including Hansen's disease (formerly called leprosy) and helminth infections, risking rising drug resistance.
Despite the high number of people affected and the severe societal and economic impact of these diseases, there are limited commercial incentives to develop new ways of preventing and treating them. Combined private sector investment in this area in 2021 accounted for only 15% of total investment. Since 2011, the overall global funding for research to develop new tools including diagnostics, vaccines and therapeutics has been largely stagnant, at around €3.5 billion per year of combined public and private money, despite the uphill battle we face because of converging crises, including the rollback caused by the COVID-19 pandemic.
In short, there remains a stark mismatch between the research needs of these diseases and the amount of funding they receive.
Back to basics
The European Developing Countries & Clinical Trials Partnership (EDCTP) has become a major player in funding clinical research in neglected diseases. This partnership between European and African countries has helped to propel products through the clinical pipeline, with significant public health benefits. I was involved in the launch of EDCTP as minister for Science, Research and Higher Education of Portugal in 2003, and was very pleased to see it recently enter a third phase.
But while it is great to see the EDCTP grow from strength to strength, it must be supported with robust investment in early research to understand the fundamentals of disease biology and the translational work to shape therapeutics and vaccines to the point where they are ready to be tested in the clinic. I am concerned to see cuts in EU funding in this area, where since 2015 there has been less than half the annual investment, compared to the average from 2008 - 2014.
Though anchored in Horizon Europe’s research ‘agenda’, neglected diseases have all but disappeared from recent work programmes. There is not one call dedicated to tackling this area of research in the 2023 - 2024 health cluster work programme.
This is in the context of breakthroughs in the application of technologies, such as mRNA, that hold huge potential for tackling infectious diseases like malaria and tuberculosis. Basic research is the key to unlock this potential. This will require committed funding, including specific calls as part of the Horizon Europe work programmes.
Traversing the valley of death
From bench to bedside, there are many obstacles in the development path of a new diagnostic or therapy for a neglected disease. As products pass through clinical trials, the costs incurred grow exponentially. The limited or restricted funding means many products with potential do not make it to the final stages of development and wither in valley of death of clinical research. Getting products across the gap and through to approval requires both a ‘push’ and a ‘pull’.
As leading global supporter of global health, the EU has an opportunity to further increase the impact of its investments in this field with the introduction of so-called pull incentives, such as advance market commitments or research prizes.
One such pull incentive, which has shown to be effective in incentivising the development of new tools for neglected diseases, is the priority review voucher, first introduced in the US in 2007. Upon approval of a new drug for treating a tropical disease or a rare paediatric disease, the developer is awarded a voucher granting expedited review of any other drug of the developer’s choice.
The EU’s changing mandate in this field opens up new avenues to target product gaps and deliver on its ambitions to strengthen Europe’s pharmaceutical sector while meeting its global obligations under Agenda 2030.
Growing threats require greater attention
Novel approaches will be essential to tackling the long-term neglect of these diseases, as the modest gains made in recent years come under threat from increased urbanisation, climate change and antimicrobial resistance. New and improved tools are needed to counter the derailing of progress, halt a looming crisis, and reinforce global health security.
In regions where neglected diseases are prevalent, funding to strengthen local research and innovation capacities, including via EDCTP, created firm foundations for a strong and effective pandemic response.
Similarly, knowledge gained from efforts to develop new tools for these diseases was invaluable to researchers in the fight against COVID-19. This shows that EU actions to tackle neglected diseases are delivering real change, to the benefit of us all. However, there is still quite some work to do. It is time we step up the fight and end the neglect.
Maria da Graça Carvalho is a Portuguese MEP.
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