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Increasing transparency in the NFP sector

An overview of revenue, expenditure, achievements and challenges

Over the last decade MS Research Australia has been dedicated to increasing the amount of funding to support the best MS research in Australia to achieve the mission of finding better treatments, the cause and cures for MS. Since inception MS Research Australia is proud to have invested more than $16 million into investigator led research projects and $10.2 million into longer term, collaborative research projects which we call research platforms. This is a total of over $26 million.

The average yearly contribution to MS research has increased from $450,000 per annum in 2000 to $3.3 million in 2015. MS Research Australia remains the largest national non-government funder of research into MS, and in 2015 the organisation allocated a larger financial contribution to MS research than the federal government. Approximately $4 million in research funding is budgeted for in the financial year (FY) 2016 – a significant 21% increase in research spending from the previous year despite a challenging funding environment.

In order to ensure that MS Research Australia can continue to commit to this level of funding, there is a strong reliance on a diverse range of financial support. 75% of the total annual funding received comes from direct fundraising relationships with individuals, trusts and foundations, corporate organisations and some support from government. Whilst 25% of our revenue is from state MS societies.

Whilst government, corporate and pharmaceutical support has remained constant, there has been a drop in state society support of MS research as a percentage of the total income. There is also a drop in bequest income from the previous decade which often is a highly variable source of funding.

In FY2015, MS Research Australia allocated 74% of the total expenditure directly to funding MS research. Of this, 27% was for investigator-led projects recommended by the MS Research Australia Research Management Council, 24% on major collaborative research projects (including the Vitamin D Prevention Trial, the MS Research Australia Brain Bank and ANZgene), 18% on Fellowships or Scholarships which support the best MS researchers and 6% on MS research operational costs to support the facilitation of our national and global research initiatives. The small MS Research Australia research team coordinate, facilitate and provide secretariat support for eight national collaborative research platforms as well as all of the investigator-led research grants. MS Research Australia is currently funding a staggering 46 ongoing investigator-led MS research projects.

The MS Research Australia Research Management Council (RMC) consists of leading MS experts who review all grant applications and recommend funding allocations to the Board. The RMC follows a robust research governance process, which is one of the most well-thought of in the industry and unashamedly copied by similar medical not-for-profit (NFP) organisations.

MS Research Australia is only one of twelve national NFPs in the medical research sector to be deemed a Category 1 funder of medical research, and the only one that funds MS research. The advantage of Category 1 funding is the leverage opportunities it provides to researchers, particularly when seeking further funding from other sources of competitive funding. It also helps to keep our best MS researchers in the country and not lose them to larger overseas institutions.

The other main sources of competitive Category 1 funding for MS research is the National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC), although with its broader remit, historically the ARC has been a less frequent funder of MS research.

The graph on the right illustrates the growth in total funding for MS research over the last 15 years provided by MS Research Australia (including the MS Australia contribution over 2002-2004), the NHMRC and other external funding bodies. MS Research Australia’s funding has consistently increased over this time, with the NHMRC remaining relatively constant with the exception of 2012 and 2014. In 2016 MS Research Australia is set to fund more MS research than the NHMRC.

In 2015, the American MS Society (NMSS) provided over $50 million to MS research, which is well over 20% of their total revenue. They have a plan in place to increase this even further over the next 5 years. The Canadian MS Society has just mandated that 60% of the entire expenditure of the national organisation must be spent on MS research whilst 40% will be spent on services for people with MS.

In FY2015, the total revenue collected from all MS organisations in Australia, (the state societies, MSA and MS Research Australia) was $106.9 million, from this amount $3.8 million (or 3.5%) goes directly to fund the best research or facilitate the coordination of research in to MS whilst approximately $56.1 million (or 52%) goes to MS services and the support costs associated with providing those services.

The MS landscape has been comprehensively and irreversibly transformed by the progress in research and therapeutics. Over the last 15 years, people are being diagnosed earlier and quicker, and disability milestones are being reached almost 8 years later on average. A Canadian study found that hospitalisations due to MS in 2011 had declined by over 75% compared to the 1984 figure.

The number of treatment options for relapsing MS has increased five-fold with more on the way.

However, more research is desperately needed, particularly into the progressive forms of MS. To this end MS Research Australia has committed to support the International Progressive MS Alliance which is leading an aggressive global push to advance treatment options for progressive MS. More research is also needed to improve disease management, to reverse damage and to prevent MS. We now need, more than ever, to double the research efforts to ensure that the momentum that has been built up over the last decade is not lost.

As a direct result of MS Research Australia funding, there have been many significant research outcomes including new methods developed for both biomedical and applied research and for clinical assessment, novel research tools, new infrastructure and new avenues for translation into practice. Australia has contributed to a number of exciting research breakthroughs in MS. This includes the role of environmental factors in MS, further evidence of the way Epstein Barr Virus is involved in MS, the identification of 110 genes associated with the susceptibility to MS and new ways to control the immune system.

What is evident from the data is that the funding of MS research in this country has significantly improved since MS Research Australia was inaugurated in 2004. The vast majority of the funding for MS Research Australia activities has come from our own fundraising and supporter network. Since 2010, MS WA has been the largest contributor to MS research amongst the MS state societies and now one of the largest funders overall.

MS Research Australia, via its research funding, has had significant impacts on the lives of people with MS in Australia and worldwide.

Unfortunately, we anticipate that funding for MS research in Australia over the next three years will be greatly challenged by:

  • A likely trend of a plateauing in NHMRC funding for MS research in Australia according to valued sources and data.
  • The static nature of funding from other federal and state government sources of revenue.
  • The Medical Research Future Fund (MRFF) is now more of a longer term proposition and the quantum of funds that will be invested in medical research is markedly reduced from what was first proposed.
  • An increased reliance on MS Research Australia for funding from Australian researchers which will create an increasing need to spread the net further with individual donors, major donors, PAFs, trusts and foundations, bequests and campaign fundraising.

The increasing need for further advancements in therapeutic options, especially for progressive MS, will require a doubling of the research effort. We greatly risk losing our best MS researchers in Australia if they cannot find adequate funding for their research.

In order to continue with the level of funding commitment, and keep the Australian MS research momentum on its trajectory, much more financial support is needed. A lot has already been achieved in understanding MS but there remains a lot more to do.

   

 

 

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Increasing transparency in the NFP sector