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European Biopharmaceutical Review

New Finance Models

A Common Cause

To further development in the field of rare diseases in the UK, a collaboration between patient organisations and medical research charities can help fund and direct vital research

About one-third of all public expenditure on UK medical research comes from the contributions of medical research charities. In 2011, members of the Association of Medical Research Charities (AMRC) spent more than £1 billion on research (1). The total funding from all charitable sources will be even greater. This amounts to a significant resource of funding that could shape the direction of future research.

Traditionally, patient organisations have not played a large role in medical funding. However, a recent report from the European Organisation for Rare Disease (Eurordis) shows that 37 per cent of patient organisations support research financially, either directly or through co-financing (2).

Patient organisations can play a vital role in medical research. They are in a unique position, with a view independent from the academic, medical or industry perspectives that typically govern the focus of research. Their main motivation is to find a treatment for a disease. Disease-specific charities also have an advantage, in that they can have much longer-term goals than other funders. It is common for patient organisations to spend decades funding research in their disease area.

Medical charities hardly lack the funding to make an impact either. According to the Charities Aid Foundation, medical causes attract more donations than any other campaign, and have been the most popular reason for donations for the last eight years. In 2011-2012, 33 per cent of UK donors gave to medical research and 30 per cent to hospitals (3). Charitable donations are also on the rise. The 2013 eNonprofit Benchmark Study provides evidence that fundraising is moving online, with a 43 per cent increase in online giving since 2011 and a 21 per cent year-onyear increase in online revenue (4).

How do Charities Donate?

Research from Eurordis shows that most patient organisations – 81 per cent – donate funding for basic research, helping to open up new areas for development that may otherwise be ignored (1). This preliminary work can then be used to leverage further funding from larger donors or, if the work has therapeutic potential, to attract the interest of the pharmaceutical industry.

In 2007, a grant of £50,000 from the AKU Society helped fund a PhD student, whose work led to the development of a cell model. With data from the cell model, £500,000 was gained from the Big Lottery Fund, which led to the creation of an animal model. Research of the animal model has provided evidence of the effectiveness of a new drug. These results helped the society to apply to the European Commission, which awarded it €6,000,000 last year to run the developAKUre project – a series of Phase 2 and 3 clinical trials of the drug in human patients.

Another example of charity funding comes from Professor David Sellwood, a researcher based at the University College, London. He received a grant of £80,000 from the Brain Research Trust to investigate cannabinoids, which led to a possible treatment that inhibited spasticity in mice. Eventually, this led to a much larger grant from the Wellcome Trust for £1.75 million to run a Phase 1 clinical trial, which hopes to address a highly unmet clinical need to create an effective treatment for spasticity.

This mechanism of using donations to secure successive grants is seen in larger funders too. Between 2006 and 2011, Medical Research Council funding of £2.5 billion led to a further £1.4 billion from charitable organisations. Opening up new research areas with a small grant is a proven way of assisting researchers to apply for larger successive grants to develop their work.

Investing in Infrastructure

The funding of basic research by patient organisations and medical research charities is a good way to explore new development areas. However, by itself it is unsustainable. These groups are unlikely to fund the infrastructure that the research relies upon.

Studies show that a country’s government should ideally provide a secure infrastructure to help promote the culture of research (5). By showing their support, and demonstrating the importance of research, governments can, in turn, help to attract charities and other funding bodies to secure future support for research.

Public funding from the government and donations from medical research charities are intertwined. A joint report by Cancer Research UK and the Office of Health Economics found that public funding helps charities to raise money by showing the government’s trust in the research they support (6).

By funding together and demonstrating support in science, charities and government can boost the sector and therefore the wider economy.

The same message is seen in the AKU Society’s research project DevelopAKUre – a series of international clinical trials. Initial funding at the Royal Liverpool and Broadgreen University Hospitals Trust led to a growth of knowledge, which allowed the charity to apply for National Alkaptonuria Centre and European funding for clinical research. The results help both parties: the AKU Society can provide a better service to alkapt onuria (AKU) patients; and the hospital has access to greater funding, resources and the experience to run future clinical trials.

Ensuring Collaborations

In a publication from Rare Disease UK, five recommendations are given, including ‘methods to foster collaboration in the field of rare disease research should continue to be explored and exploited’ (7).

There are initiatives to help develop collaborations, and this is evident from the first meeting of the International Rare Disease Research Consortium – an innovative group that aims to promote rare disease research primarily through increased collaboration across the globe. In the UK, the National Institute of Health Research (NIHR) founded the NIHR Office for Clinical Research Infrastructure (NOCRI), with the aim of working with all clinical partners, including charities and patient organisations. Initiatives like NOCRI help to emphasise the mutual benefit for donors and recipients, and collaboration is key to enabling the effectiveness of charitable donations, particularly in clinical research.

 Future Direction Patient organisations and medical research charities have an important role to help fund and direct medical research. They have the drive to help patients, the ability to unite potentially opposing organisations, and the access to funding. With funding often the limiting factor, charities need to focus on innovative basic research and use these results to bring in additional funding, support and partners.

The key is collaboration, with infrastructure provided by governments, and engagement with academia to plan and work on research, and eventually with industry to develop the possibility of new therapeutics. It is clear that uniting over a common cause is the most effective way to begin a collaboration and encourage new medical research in a rare disease.


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Oliver Timmis is the Head of Projects for the AKU Society, an entrepreneurial patient organisation supporting those diagnosed with the rare disease, alkaptonuria. He graduated with a BA in Natural Science (Physiology, Development and Neuroscience) from Cambridge University in 2010. At the AKU Society, he works on fundraising strategies, including successful applications to the UK Department of Health to create a National Centre for Alkaptonuria, and to the European Commission FP7 to fund an international clinical trial in AKU.

Email: oliver@akusociety.org
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