With the world’s attention on new and re-emerging outbreaks of COVID-19, advocates are working towards policies that ensure care for overshadowed patient groups.
In a recent virtual meeting hosted by the European Alliance for Patient Access, advocacy groups from across Europe explored how to continue meeting the needs of people living with RMDs, rheumatic and musculoskeletal diseases, in particular.
Balancing the short-term needs of COVID-19 patients with the long-term needs of people with RMDs is a challenge.
- Medication availability. In some cases, medications for RMDs are being diverted for COVID-19 treatment. Advocates are working to ensure sufficient supplies for the ongoing care of people with chronic conditions.
- Pharmacy logistics. In other cases, medication access presents a challenge because patients fear that a trip to the pharmacy will expose them to COVID-19.
- Access to therapies. Fear of COVID-19 is deterring some patients from going to the hospital for routine infusions and from seeing their rheumatologist as scheduled. Patients may also struggle to access physiotherapy. COVID-19 patients undergoing physiotherapy after ICU admissions or extended hospital stays has increased demand for the service.
Proper Use of Telecare
Telecare is useful but not right for everyone, advocates agreed. For example, undiagnosed or newly diagnosed people – those with active or uncontrolled symptoms – should still be seen face to face.
Advocates also expressed concern that telecare could exacerbate health inequalities due to the cost of internet service and technology such as laptops and smart phones. The group did note, however, that some telecare can occur over a traditional phone, keeping costs and technology requirements low for patients.
Policies that Acknowledge Disease Burden
As countries ease lockdowns, people with RMDs face emotional decisions about how to resume daily life while staying safe.
Advocates explained that the burden of disability among these patients outweighs that of mental health patients, though policymakers have thus far given more attention to COVID-19’s mental health implications.
Education & Collaboration
Coordinated efforts among patient advocacy groups, scientific organisations and policymakers during the pandemic continue to ensure that trusted and consistent information gets to patients. Outreach has had to be mostly virtual.
- Support services. The National Rheumatoid Arthritis Society launched a service called “here for you.” Trained volunteers take calls from people who want to talk about feeling isolated, taking medications or other challenges related to COVID-19.
- Online resources. Most organisations have set up COVID-19 pages within their websites to provide up-to-date information to their patient populations.
Discussion among the patient advocacy organisations made one thing clear. As COVID-19 continues to present access challenges, patient advocacy groups are working together to increase patient education and to further policies that allow for continued, optimal and patient-centred care.