Written evidence submitted by the Association of Medical Research Charities (AMRC)

Submission to Select Committee on Culture, Media and Sport inquiry on the impact of COVID-19 on the charity sector, 15 April

Executive summary

• Medical research charities are part of the UK’s world-leading life sciences sector; in 2018 charities collectively invested over £1.3 billion in UK R&D and funded 17,000 researchers’ salaries across universities, the NHS and other bodies.
• Medical research charities are committed to doing all they can to support the national effort to combat COVID-19. Many charities have rapidly established patient support services, supported the secondment of clinical research staff to the NHS front line and are contributing to the research effort with funding and infrastructure. This support can only continue if charities remain resourced and effective which is likely to require support from Government.

• COVID-19 poses a real threat to the viability of charity-funded research, both now and in the future.
• Three-quarters of AMRC’s members anticipate a reduction of 25% or more in fundraising income, with over a third of charities expecting a reduction of 40% or more.
• Significant losses in fundraising income will have a long-term impact on charity research and on the life sciences sector where charities play essential roles in the ecosystem.
• As well as providing funding, charities drive innovative collaborations and partnerships with key sector partners and provide assets including data, strategic patient insights and scientific expertise.
• These roles are essential to achieve the UK’s ambition to be the global hub for life sciences.

• Charities are already having to make difficult choices to defer research and halt new initiatives. More than two thirds of AMRC’s members are deferring upcoming grant rounds and withdrawing future funding. This will have an impact on the UK’s research base now and in the future.
• More than half of AMRC member charities have stopped, paused or delayed the majority (75-100%) of their clinical trials studies.
• We estimate that around 126,000 patients are currently unable to participate in paused and delayed charity-funded clinical studies.
• Over half of our members have reported that 75-100% of their current grants in universities are on hold.
• Medical research charities are unlikely to benefit from the support package for charities announced by the Chancellor as they do not provide commissioned frontline services, despite supporting vulnerable patient communities through this crisis. AMRC members are concerned that the announcement may falsely reassure the public and others that the charity sector as a whole is being financially supported.

About the Association of Medical Research Charities (AMRC)

• AMRC is the membership organisation of the leading medical and health charities funding research in the UK. We represent over 140 medical research charities of a variety of sizes; from household names such as Cancer Research UK, Wellcome and the British Heart Foundation to smaller charities who invest in specific areas of unmet need. 
• Medical research charities have invested nearly £13 billion in research in the UK since 2008, with £1.3 billion invested in research in 2018 and funded 17,000 researchers’ salaries across universities, the NHS and other bodies.[1]
• AMRC membership requires adherence to robust peer review standards - audited every five years - to ensure that charities are supporting the highest quality research and the best researchers. This mark of quality allows AMRC members to benefit from the Charity Research Support Fund (an element of university research funding) in funding research in universities and receive funding support for some of the costs associated with clinical research in the NHS through the AcoRD agreement. 

Chancellor’s charity support measures to mitigate impact of COVID-19

• The Chancellor’s announcement of a package of support measures for charities[2] in light of COVID-19, though very welcome to support some frontline service delivery organisations, will not help to mitigate the challenges being faced by health charities who fund vital medical research.
• As both research funders and patient support organisations, many charities are facing increased pressure on both services and resources for COVID-19 research at a time when fundraising is impacted across the board and income has dramatically reduced.
• AMRC members are concerned that an unintended consequence of the announcement may be to falsely reassure the public and others that the charity sector as a whole is being financially supported. Whereas medical research charities are unlikely to benefit from the measures as they do not provide commissioned frontline services, despite supporting vulnerable patient communities through this crisis.

Charities are committed to supporting the national effort to combat COVID-19

• Medical research charities are committed to doing all they can to support the NHS, patients and their research communities at this critical time. This support can only continue if charities remain resourced and effective which is likely to require support from Government.
• Many AMRC charities are working tirelessly to provide advice to vulnerable patient communities, working with the NHS. Examples include:
• A coalition of 21 cancer charities (One Cancer Voice) have provided common advice to all cancer patients on the outbreak.
• Diabetes UK have experienced high levels of patient engagement: their helpline handled 6964 calls (the most ever handled in a month); there were 1.5 million users of their digital platform (an increase of 92.8% on March 2019) and they are now working to support local groups to meet remotely.
• The British Heart Foundation are experiencing a 125% uplift in the number of calls to their patient support helpline and are actively exploring ways to enhance the support they’re able to provide.
• Asthma UK is actively providing advice and support to people with asthma, including shielding advice for very high-risk patients.
• The Cystic Fibrosis Trust have doubled staffing on their helpline and are providing shielding advice, public health guidance and weekly videos from a leading clinician on COVID-19. They are also providing online welfare information and have written to all major supermarkets about the availability of delivery slots for people with cystic fibrosis and their households.
• Alzheimer’s Society’s Dementia Connect support line received nearly 3,300 calls in March alone and Talking Point has seen a 600% increase in sign-ups. The charity has provided coronavirus guidance for people affected by dementia on its website and is looking at ways to run existing services remotely.
• The Stroke Association has seen a 13% increase in calls to their helpline, with 48% of enquiries regarding COVID-19 and an average tripling of traffic to their self-recovery and community website My Stroke Guide.
• Versus Arthritis have launched a virtual assistant for those with arthritis and musculoskeletal conditions to provide a ‘one stop shop’ about how COVID-19 will affect their daily lives.
• Charities are supporting frontline NHS care.
• Over 1000 charity-supported clinical research staff from 44 of AMRC’s member charities have been seconded to front line patient care.
• Charities are also supporting the national research effort. Examples include:
• The Wellcome Trust has pledged £10 million to tackle the COVID-19 epidemic.
• LifeArc has created a £10 million fund to progress research into treatments for COVID-19.
• The Crick Institute, funded by both Wellcome and Cancer Research UK, has been repurposed as a testing facility, to help combat the spread of infection and allow key workers to perform lifesaving duties and remain safe.
• Many Cancer Research UK laboratories throughout the country are providing vital testing kit and skills.
• Diabetes UK have launched a COVID-19 Rapid Response Research Call to further the understanding of COVID-19 in relation to people living with diabetes.
• MQ and the Academy of Medical Sciences (AMS) have rapidly convened an expert group to develop mental health and neuroscience research priorities to COVID-19.
• The British Heart Foundation are encouraging their funded researchers to focus their course of inquiry where possible on the real risks faced by people with heart and circulatory conditions exposed to COVID-19.
• The UK Dementia Research Institute, funded by Alzheimer’s Society and Alzheimer’s Research UK alongside the MRC, is contributing in a number of ways to the UK’s capacity for COVID-19 testing.

Charity-funded research is facing significant challenges and threats

Economic impact on charity research

• For many charities, fundraising is crucial to support their R&D investment. This is reliant on charity shops being open, events taking place and donors being financially stable.
• AMRC's members are anticipating a significant reduction in fundraising income; three-quarters anticipate a reduction of 25% or more, with over a third expecting a reduction of 40% or more.[3]
• As a result, more than two thirds of charities are deferring upcoming grant rounds and withdrawing future funding.
• AMRC members are starting to furlough charity staff, including their research teams who oversee the allocation and delivery of research grants. 
• Significant charity contributions to the research base could be impacted.

Research in the NHS – clinical trials and studies

• In 2018 AMRC’s members recruited 212,000 patients onto over 1,300 charity-funded clinical studies or trials, equating to almost a third of the innovative clinical research supported by the NIHR’s Clinical Research Network.

• Charities fully support the difficult decision made by government to stop, or pause, ongoing and new research to prioritise staff time for patient care and resources for COVID studies.
• More than half of AMRC member charities have stopped, paused or delayed the majority (75-100%) of their clinical studies due to COVID-19. Consequently, we estimate that around 126,000 patients are currently unable to participate in charity-funded clinical studies.
• For many patients the opportunity to take part in clinical research provides hope and losing this will be devastating. It’s vital that charity research can recommence as soon as the NHS and the nation are ready. 
• In the event of a six-month delay, a subset of our members (28 charities) estimated a collective additional cost of over £5 million due to costed extensions and salaries for clinical research. Delays will have other effects including reducing the validity and relevance of the trial.
• Charity-funded trials are at risk of not being able to restart without additional funding or support. Nearly 40% of our members are concerned that over half of their clinical studies will be unable to restart.
• Charities are committed to supporting researchers who have been seconded to the front line during the crisis. However, the financial impact of continuing to fund salaries is a concern. Charities anticipate that some of these costs will be recoverable from the NHS.

Research in universities

• Charities funded over £1.1 billion of medical research in universities last year. This funding includes researcher salaries, PhD studentships and project costs including consumables, reagents and animal studies.
• Charity funded research in universities is largely stopped, paused or delayed due to COVID-19. Over half of our members have reported that 75-100% of their current grants in universities are on hold.
• A subset of our members (54 charities) estimate a collective cost of £95.5 million to their affected grants as a result of these pauses and delays.
• The immediate focus for our members is ensuring support for, and completion of, current research and mitigating the impact of the delay. Many charities are deferring future research plans.
• Delays will have financial and other knock-on effects that last beyond the duration of the crisis. Restarting research studies is expensive and will lead to the collapse of much research. Shortfalls in funding research are likely, with many charities unable to continue funding research for some time as a result. For others, more severe financial implications will impact their viability as a research funder.
• Continued payment of staff salaries for paused and delayed research is a pressing concern. A subset of our members (45 charities) estimated a collective additional cost of £29.3 million as a result of continuing to pay researcher/other staff salaries for a pause or delay of six months.
• With many charities offering no-cost extensions[4] to their grant holders due to financial uncertainty, there is a potentially significant gap.
• Many AMRC members predict that the reduction in their fundraising income will have the greatest impact on their response-mode university funding which supports curiosity-driven, basic research.
• Partnerships between charities and universities are central to the delivery of charity-funded research. The university sector will also be seriously financially affected, particularly due to the loss of income from international students which is central to university sustainability. This threatens the UK’s world-leading research base and the pipeline that supplies future charity-funded researchers.

Our asks to support medical research charities

• Medical research charities are an important part of the life sciences and must be part of any support measures that the research sector is given to mitigate the impact of the COVID-19 crisis. Funding should be available to kick-start clinical and non-clinical research when the NHS and the country is ready.

As immediate priorities, we are asking for:

• Targeted and tailored emergency funding to be made available to AMRC member charities to ensure the continuity of charity funded research now and in the future. This will allow research to restart and continue ensuring the UK research ecosystem is maintained and patients benefit from charity funded research.
• This should include funding for non-commercial clinical research to restart current projects, potentially delivered via the NIHR’s Clinical Research Network, and funding to cover the unexpected costs of pausing and halting non-clinical research in universities.
• Urgent clarification from Government and universities is needed on how the furloughed staff scheme applies to researchers within universities whose salaries are funded by charities.
• Many charity researchers are directly employed by universities. Clarity is needed on how the scheme could be used when a grant that supports a researcher’s salary is ongoing, but financial pressures mean the funding charity can’t pay invoices due to cashflow prioritisation or offer costed extensions due to loss of income.
• This information is urgently required so that charities can, where appropriate, plan and model the financial impact of costed extensions in their grant portfolio.
• Clarity on how the salaries of clinical researchers seconded back to the NHS front line will be recovered where they have continued to be paid by a charity. Funding is required to ensure that salary costs are recoverable from the NHS.

Why does it appear that medical research charities have more reserves than other charities?

• Medical research is long term. Charities need to have the resources available to give researchers the confidence that they can continue to fund future years of their projects. The majority of medical research charities’ grants fund research over a number of years, typically 3 or 5. 
• Therefore, the bulk of reserves for research charities are not ‘free’ reserves but held against already committed research.
• In addition, especially in the case of rare diseases, charities aim to encourage new researchers into their area of specialism and they must have the confidence that funding for their research will be available into the future.
• Unlike some charities where a significant proportion of their income derives from long-term contracts, most medical research charities rely almost exclusively on fundraising. 
• COVID-19 has worsened further what was already a difficult fundraising climate. Where possible, prudent medical research charities have tried to retain a certain level of reserves in order to ensure that they can continue to meet their commitments in the event of a temporary drop in income.  However, COVID-19 is completely beyond the scenarios envisioned.