The last few months have been undoubtedly a challenge for the whole society and have left a significant mark in history. Although many industries have been impacted by the Covid-19 pandemic, one of the most impacted sectors has been healthcare.
The coronavirus crisis has brought out many lessons with itself but one of the really critical ones to remember is that HEALTH is not a ‘nice-to-have’ thing that is kind of a given but it’s essential to the functioning of our societies, our economies and our political systems.
For all those people living with chronic conditions, the lockdown presented another challenge, another source of anxiety and fear. Lack of access to medical care, shortage of medicines, higher risk of being infected due to the compromised immunity – these were just a few of the obstacles they needed to face during their patient journey.
For situations of this unprecedented scale, there has been an ever-increasing need to understand and join efforts among patient organisations. They have been on the front lines of the fight against COVID-19, providing advice and support to the patient communities they serve. In the midst of this global crisis, they represent and care for those most vulnerable to the impact of COVID-19, i.e the patients. And all of this, at a time when their daily operations, projects, events and staff were deeply affected by the crisis. This has had an implication on revenue, on capacity, even their long-term viability and sustainability.
At FindMeCure and FindMeCure Foundation we have always been close to the work of Patient Advocacy Groups and have supported them and their members in terms of better knowledge of the drug development process, clinical trial awareness and support when it comes to finding relevant clinical trial options. As we highly value the importance of understanding patients and their pathway, we were closely monitoring their work during the pandemic and how they managed to address patients’ concerns and worries.
We mapped the patient advocacy landscape and created a single resource on “The Patient Communities’ Perspectives and Activities during the Covid-19 Pandemic” where we explore the activities of various international, pan-European and national patient advocacy groups and highlight the impact of the coronavirus pandemic on the patient communities they act for.
Perspectives of patient communities
There was no lockdown for chronic conditions such as cancer, mental illnesses, rare diseases or autoimmune conditions. Patients don’t suddenly stop requiring treatment just because there is a new disease to worry about as well.
Cancer patients have been at particular risk of treatment delay, deprioritization and discontinuation. Those recently diagnosed with cancer, or in the midst of cancer treatment, have been facing disruption for all but the most urgent procedures because of concerns about their susceptibility to the serious risks of coronavirus, and the deficit of personnel, beds, and equipment dedicated to Covid-19 cases. Lack of screening programmes and doctor visits have caused delayed cancer diagnoses and impact on health systems for the years to come.
There has also been widespread concern and fear among people who live with rheumatological conditions, such as Lupus and Rheumatoid Arthritis who are on hydroxychloroquine, given the interest in this product as a possible treatment for Covid-19 and the resulting stockpiling of supplies.
Non-urgent care, including surgery, has been cancelled, and hashtags such as #StopElectiveSurgery became trending on social media not taking into account that definitions of urgency vary and postponing surgery may result in months of pain and disability for many.
People living with mental illness are very vulnerable to disruption of care. For some, stopping or postponing medication can be life-threatening. Still, many of them were finally feeling understood that healthy people rise to meet them in that place they usually reside and realize what is to live in their world of self-isolation and constant anxiety.
How patient organisations adapted to the new “unknown”
With limited capacity and resources but armed with huge empathy and care, many patient organisations around the world rapidly responded to the coronavirus crisis. By providing their communities with guidance and advice on how to get through this, they proved they exist to serve the most vulnerable in good or bad.
From creating useful Resource Hubs on their websites, through working with health professionals for virtual meetings and webinars, to launching surveys aiming to understand the far-reaching impact the pandemic is having on patients and families, patient groups filled the information gap and showed great support.
In our study, we have compiled a list of popular patient advocacy groups worldwide and their useful initiatives for their communities in the times of pandemic.
Now more than ever, the industry needs to step up, listen and support their work as patient advocacy organisations have ensured patients are becoming more aware of how infectious diseases can be investigated and managed, and how important the role of research is to change the course of such conditions.