As policymakers grapple with whether, or when, to end coronavirus lockdowns, patient advocacy organisations continue to urge policies that protect people with chronic disease.
In the near term, one critical factor is continuous access to care. Particularly in countries where restrictions remain in place, some patients may find it difficult to see their health care provider or to maintain their regular medication regimen. The European Patients Forum emphasises how telemedicine and home delivery of medication can keep patients on track amid disruptions. Making such accommodations affordable and widely available can ensure continuity of care, the organisation explains in a recent statement.
The possibility of drug shortages also weighs heavily on advocates’ minds. Earlier this month, people with rheumatoid arthritis and lupus began reporting trouble getting their prescribed hydroxychloroquine. The antimalarial drug was considered as a potential treatment for COVID-19, leading some people to purchase and stockpile the drug at their homes, according to anecdotal reports. The European Medicines Agency has announced EU-level measures to prevent and address supply challenges.
“This situation should be continually monitored,” emphasised the European Federation of Neurological Associations, an umbrella organisation representing pan-European neurology patient groups.
Meanwhile, the European League Against Rheumatism has established a database to track how COVID-19 affects people with rheumatic and musculoskeletal diseases. The database will highlight how people being treated for such diseases with steroids, biologics or NSAIDs experience COVID-19. The information collected, the organisation explains, will help guide health care providers in treating and protecting patients.
As some countries begin cautiously reopening, patient advocates are also looking to the long term.
Disruption to research concerns advocates like those at the European Federation of Neurological Associations, who question the long-term impact on innovation. “During the pandemic, neuroscientists across Europe left their labs as universities closed,” the group’s website explains. “Despite many researchers continuing to work productively from home…the pace of research in our field has inevitably slowed down.”
The all-consuming task of preventing COVID-19 has left some policymakers less aware of other public health issues. That can include the needs of people living with chronic diseases. Patient advocacy groups play a vital role, now more than ever, in bringing policymakers’ attention to the needs of this vulnerable patient population. Advocates also continue to collect and disseminate critical information – educating patients across the continent and bridging the gap between policymakers and those living with chronic conditions.
Their efforts could well ensure much-needed protections for chronic disease patients, both now and when COVID-19 finally subsides.