The impact of COVID-19 on patients with chronic or life-threatening conditions
Read our latest blog on the impact of the pandemic on patients with chronic diseases and rare conditions around the globe.
The implications of the coronavirus go beyond patients suffering from COVID-19. 150 million patients with chronic diseases and 30 million with rare conditions continue to need care and treatment during these trying times as the services they rely on are pushed to capacity due to the exceptional situation.
Access to hospitals is currently restricted in many jurisdictions to help curb the spread of the virus. Even where this is not the case, hospitals are often overburdened. Some patients are scared to go to the hospital to receive their treatments. Disruptions to regular care can occur in these circumstances. However, protocols need to be in-place to ensure access is not fully interrupted for patients who require long-term or outpatient care, and that patients are not discriminated one over the other, the rare disease patient group – Eurordis – has expressed its concern about this growing phenomenon, see here.
Many innovative treatments need close supervision and treatment from specialised physicians, particularly those used in treating patients suffering from rare diseases or other chronic conditions. The mode of administration of these treatments is often through injectables that need to be given in the hospital setting. Provision of such treatments needs to be consistent and sustained to ensure their effectiveness in improving or maintaining a patient's condition. Patients with certain illnesses, for example cancer patients undergoing chemotherapy, are at increased risk of developing complications due to a compromised or weakened immune system. This makes hospital visits today a potentially hazardous journey. Furthermore, clinical trials tackling rare and chronic diseases are also facing challenges. A number of trials have been interrupted by the outbreak, thus delaying and reducing researchers' ability to determine whether treatments under investigation will be effective in patients that need them.
It is understandable that COVID-19 related patients receive all possible care now that Europe is facing the most challenging health threat crisis of modern times. At the same time, if patients with rare and chronic diseases are left behind, we run the risk of untold long-term pressures on healthcare systems may continue even after the current pandemic is under control.
Many rare diseases are prevalent among children. The coronavirus is not understood to be endemic in children or youth. We risk to under-emphasise the attention which must be paid to children suffering from a range of paediatric conditions, particularly those with rare diseases, and crucially to their families, who often form part of their care network.
EuropaBio supports the recent statements on these issues from EURORDIS, the European Patients Forum, and welcomes the 10 point action plan published by the European Commission on coordinating research efforts. The biotechnology industry is working tirelessly to find solutions against the coronavirus.
EuropaBio and our Members are deeply concerned about the impact COVID-19 is having on patients suffering from rare and chronic diseases, such as treatment delay and discontinuation. Biotechnology companies are working on alternative methods of delivering timely access to often critical treatments for non-COVID patients when their normal regimen may have been disrupted. We also support governments' efforts to introduce measures which alleviate burdens on the healthcare system; Greece for example has allowed patients to receive prescriptions for medication electronically. Alternatives to hospital-based treatments are found, for example, in providing for home infusion systems for rare disease patients. This ensures patients receive the treatment they need, decreasing the burden on the healthcare system, and offering them the ability to remain safely at home. Other remote solutions must also be explored together with the competent health authorities, particularly in relation to clinical trials.
These are unprecedented times, presenting extraordinary challenges that require collective innovative thinking, solidarity behaviours and flexible actions. As per Gandhi, "the true measure of any society can be found in how it treats its most vulnerable members". Now is the time to show the true extent of our ability to work together.
https://www.theguardian.com/world/2020/apr/07/life-hanging-by-a-thread-for-italian-cancer-patients-in-coronavirus-crisis?CMP=share_btn_tw https://www.eu-patient.eu/COVID-19/epf-covid-statements/epf-statement-on-the-covid-19-pandemic/ https://www.eurordis.org/covid19openletter https://ecpc.org/news-events/news/ https://www.euronews.com/2020/04/06/greece-begins-digital-odyssey-as-coronavirus-crisis-sparks-innovation
Thomas Bols, Head of Government Affairs & Public Policy, EMEA & APAC, at PTC Therapeutics, contributed to this blog.