Patient advocates: hard hit at the time of greatest need

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Patient groups and charities have been hit hard by the COVID-19 pandemic.

With reduced capacity and opportunity for fundraising, extra pressure on support services and attention diverted elsewhere, it will take a long time for them to recover and return to business as usual. As significant players in the funding of clinical trials, and the recruitment of patients for trials sponsored by others, this disruption will have a knock-on impact into the clinical trial space.

In 2018, the Association of Medical Research Charities (AMRC) members invested £1.3 billion in medical research across the UK, accounting for 41% of all publicly funded medical research nationally. However, in a recent survey of its members the AMRC found that more than two thirds of members are deferring upcoming grant rounds and withdrawing future trial funding, due to uncertainty on income.

While it is likely that many trials will start up again at some point, a number of them will still have a funding gap. Furthermore, delays to trials likely means lost data or disrupted reporting, among other negative ramifications, and therefore the costs required for completion have increased beyond the initial budget. Not all trials will be able to find the additional income to restart, which will inevitably slow the pace of medical innovation.

This increased cost of trials is coupled with the loss of income for patient groups and charities. In the UK, the National Council for Voluntary Organisations (NCVO) estimates that charities are due to lose £4bn worth of income in the immediate 12 weeks post lockdown. These organizations have lost income through a lack of opportunities to fundraise, with many high-profile sponsorship events cancelled, as well as a reduction in charitable donations as money is channelled towards more pressing, or more visible, causes related to the pandemic.

The UK Government has dedicated a £750 million support package to charities in recognition of the additional support they will need to weather the COVID-19 storm, but this will only go some way to keeping charities afloat. Additionally, it is unclear if all health charities will be able to access this funding based on the criteria, particularly the requirement to provide commissioned frontline services. In response to this there has been a call from a group of MPs for the Government to provide additional support specifically for medical research charities.

These funding issues come at a time when patients and caregivers most need support from charities. People with underlying health conditions are particularly vulnerable to COVID-19, and many charities have seen a surge in demand for their helpline services, particularly in supporting patients with advice on existing care regimens. These crippling pressures on funding and support services means their often already-limited resources are being channelled to these areas, and activities perceived as less urgent, such as clinical trials, are being neglected.

Long term, these pressures on funding and capacity will balance out, but we are likely to lose some smaller organizations with less cash reserves, and smaller supporter bases, along the way. These smaller organizations are often set up to support rare conditions, or areas that have an existing lack of support. This, in turn, will result in a widening gap, and increased inequalities in the treatment of different conditions, as clinical trials in those already neglected conditions are the ones that are least likely to re-start.

As companies developing therapies to treat such conditions, it will be critical to consider how best you can support and co-create campaigns with your advocacy partners during these challenging times, particularly in disease areas that are going to be the most impacted. And as healthcare communications specialists, perhaps there are ways that we—as an industry, or as individuals—can identify ways we can continue to support patients whose needs continue despite the pandemic, and these hard-hit organizations, through other types of initiatives.

Are you interested in discussing further how to support advocacy partners at this time? Please contact us.

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We know there are numerous considerations when it comes to the impact of COVID-19 on clinical trials and what this means for your organization. We are here to help.