Empowering Collaboration in the Advocacy Storm

On 11 March 2020 the World Health Organisation (WHO) declared a global pandemic. 295 days, or 9 months and 20 days later, the WHO issued its first emergency use validation for COVID-19. This allowed countries to expedite their own regulatory approval processes to import and administer the first COVID-19 vaccine.

For the first time in history, humanity was aligned to a single goal, to find a ‘cure’ to this ‘disease’. Unknowingly, we all became patient advocates overnight, albeit in different boats, but in the same storm, advocating for an improvement to the current situation. Never have we witnessed behavioral, systemic, and cultural changes on a such a large scale at such an alarming rate.

Responding to the needs of the global community, our governments around the world championed a change; demonstrating that the drug discovery and development process can be accelerated, and we can provide access to testing and novel therapies on mass and in unprecedented timeframes.

Our governments instinctively adopted the role of patient organizations, providing us with the information and support we needed when living with a global pandemic:

• Awareness – Recognizing COVID-19 to support prevention, earlier diagnosis, equal access to testing, including new treatment options
• Support – Providing information and guidance to patients, loved ones, and the public throughout their journey
• Empowerment – Encouraging patients, their loved ones, and the public to advocate and protect themselves by respecting lockdowns, social distancing, hand sanitizing, and the wearing of face masks
• Research – Providing funding and supporting continued study into causes, diagnostics and new treatment options that are preventative and at the point of care
• Policy – Ensuring current and new healthcare rules and guidelines reflect the needs of those who require access to care
• Access – Advocating for patients, to ensure they can get the latest treatment options and the minimum standard of care appropriate to them

Simultaneously, our leaders in governments became our patient leaders collaborating with the pharmaceutical industry, researchers, and policymakers to provide insights into the needs of the communities they represent, all in the pursuit of a vaccine.

Concurrently, health care professionals around the world dealt with the full impact of the pandemic, doing their utmost to manage a tsunami, while communicating their needs to government bodies in preparation for a vaccine and a global roll out.

Understanding the storm

Only by fully understanding and appreciating the needs of a community, by being in their storm, can we really drive change that makes meaningful differences to patients. Patient advocates have been championing this model since the 1980s when the AIDS epidemic first took hold. COVID-19 has demonstrated that this model is effective globally.

We have learned for progress to be made, and for a change to happen, collaboration is the single most important ingredient, where all stakeholders who are committed to a disease are recognized as equals and are aligned to a single goal. This is the result of truly comprehending the storm! Competition and corporate and personal objectives must be put to one side and the focus must remain on accelerating an exit from the current standard, in pursuit of progress or even a curative treatment.

In our pursuit of progress, no one group, or individual owns the drug discovery and drug development ‘table’, and therefore it should no longer remain the responsibility of the pharmaceutical industry to decide who is at the table when decisions are being made that impact patients.

When decisions are being made that impact patients, we should be asking ourselves: “are the ‘four P's’ (Patients, Physicians, Policymakers and Pharma) represented at this table?” Only when this question becomes a standard and is implemented without thought, will we experience progress on a scale seen during COVID-19.

The rise of the patient advocacy team within the pharmaceutical industry is a positive indication that this change is happening. 15 years ago, patient advocacy teams were a nice-to-have function, and they are now becoming an integral component of the drug discovery and development process.

Patients organizations provide patient advocacy teams with an opportunity to understand the storm, albeit from a distance and through a very small window, but this is still progress. However, meaningful change will be a long time coming.

Empowering collaboration

The pharmaceutical industry has an important role to play in the future of patient advocacy. With their resources and influence, the pharmaceutical industry can and must empower patient organizations and their leaders to become the facilitators and champions of collaboration, bringing physicians, researchers, policymakers, and industry into the storm and around the table.

Just like we listened to our governments during the pandemic, and allowed them to advocate for our needs, we need to apply the same mindset to patient advocacy and our partnerships with patient organizations; allowing patient organizations to help all stakeholders understand the storm and define what progress looks like for patients.

Only when the drug discovery and development table is an equal place for patient leaders, patient organizations, physicians, and the pharmaceutical industry can we truly say that we are successfully collaborating with the community and bringing therapies to patients that make a meaningful difference.