COVID-19: Putting Resources to the Test

While COVID-19 has firmly established itself as a threat both to our health and any return to “normal” life, it also serves as a reminder of the inequities that exist within society, many of which have become more pronounced since the beginning of the pandemic. This is particularly evident within our health systems around the globe, many of which are under-resourced and ill-equipped to cope with the growing challenge of providing affordable, accessible and timely treatment and care to those who need it.

With respect to genetic testing; a crucial component of the retinal disease diagnostic process, especially for people who may be living with an inherited retinal disease (IRDs), a recent study conducted at the University of Arkansas has indicated that the primary concern for many people considering a genetic test is the associated financial burden.

Of 304 individuals who were evaluated in this study, 140 people did not receive a genetic test, a staggering 59% of whom declined due to financial concerns. This is very concerning as genetic testing is not a luxury but a necessity which can confirm a diagnosis, empower patients with the knowledge to understand their condition and allow them to participate in studies and trials investigating therapies and cures specific to their genetic diagnosis. Therefore, sufficient support and funding from governments and other organisations is essential to ensure genetic testing is fully available to everyone who requires it.

In response to COVID-19, EU4Health; an initiative dedicated to supporting health systems, staff and patients was originally designed with an allocated budget of €9.4 billion, aiming to strengthen health systems across Europe for future epidemics, as well as to make medicines and medical devices available and affordable. However, following the budget cut to €1.7 billion, EURORDIS; the European Organisation for Rare Diseases released a statement highlighting the urgent need for such an ambitious health programme².

EURORDIS Chief Executive Officer, Yann Le Cam described the European Council’s decision to reduce the available budget as regrettable, remarking that it was “the perfect opportunity to increase resources to protect EU citizens, in particular people living with a rare disease, by enhancing telemedicine, better infrastructures and at home therapies”.

Similarly, a public opinion survey commissioned by the European Parliament across the 27 EU Member States published in mid-July has outlined a number of key areas for consideration moving forward, particularly the allocation of funds to public health³. Of the 24,000 respondents to the survey, 55% believe that EU spending on public health should be the priority, which is even more relevant now as 57% report personal financial difficulties due to the COVID-19 pandemic, with loss of income the most referenced issue in 21 Member States and may have a negative impact on their ability to access care.

It is imperative that despite the distraction of the COVID-19 pandemic, access to essential resources and services such as genetic testing must not be determined by an individual’s financial circumstances, but should be guaranteed as a public health priority, with support from governments and organisations who recognise the importance of these resources.

References:

1. Lowery, R.S., Dehnel, J.R., Schaefer, G.B. and Uwaydat, S.H., 2020. Rates of diagnostic genetic testing in a tertiary ocular genetics clinic. Ophthalmic Genetics, 41(3), pp.271-274.
2. EURORDIS: European rare disease community calls for more ambitious health programme in the face of budget cuts to EU4Health Programme. Available at https://download2.eurordis.org/pressreleases/EU4Health_EURORDIS_statement_Final.pdf. Accessed July 2020.
3. UNCERTAINTY | EU | HOPE: PUBLIC OPINION IN TIMES OF COVID-19. Available at https://www.europarl.europa.eu/at-your-service/en/be-heard/eurobarometer/public-opinion-in-the-eu-in-time-of-coronavirus-crisis-2. Accessed July 2020.