In the spring of 2022 during the pandemic, a small group of individuals ignited a movement that would go on to become the largest patient equality campaign in the history of the United Kingdom, with far-reaching global consequences. This campaign, known as the “Forgotten 500k,” was born out of a dire need for immunocompromised patients to have their voices heard and their health safeguarded during the pandemic. Immunocompromised patients are extremely vulnerable to the virus due to their weakened immune system and lower responses to coronavirus vaccines.
The movement was led by Nikola Brigden who was supporting her husband with a rare blood cancer, Martin Eve who has rheumatoid arthritis and kidney disease, Mark Oakley who has sarcoidosis, and supported clinically by Associate Professor in Medical Oncology, Dr. Lennard Lee. The&Partnership and MSIX worked to create a wide-reaching campaign that would change the lives of countless individuals and set a powerful precedent for patient advocacy worldwide. It allowed thousands of immunocompromised patients, to connect with each other virtually and provide peer support and access to experts and the latest information.
At the heart of the Forgotten 500k Campaign was a simple yet profound demand: to provide patients who had responded poorly to COVID-19 vaccines access to new treatments, such as monoclonal antibodies like Evusheld. For over two years, many of these patients had been living in a state of continuous isolation, unable to hug loved ones or spend time with their families. As the Winter of 2022 approached, they faced the prospect of yet another Christmas in isolation.
During its 18-month tenure, the Forgotten 500k Campaign generated notoriety as a patient movement generating one of the highest number of most parliamentary questions than any other campaign in recent history. With the support of the All Party Parliamentary group on Vulnerable Groups to Pandemics in Parliament, led by Lord Mendelsohn and Bob Blackman MP, nearly 200 questions were posed by Members of Parliament. Daisy Cooper MP and Andrew Gwynne MP provided cross party leadership, empowering all ministers who were receiving letters from their constituents with the ability to receive the latest government responses and provide support back out to the most vulnerable in their towns and cities. The number of questions, surpassing all other health-related questions by a considerable margin, made it one of the most impactful health campaigns experienced by parliament since the breast cancer Herceptin controversy. The pressure of the campaign culminated in a several parliamentary debates, with concessions received from the Government Minister.
In addition to social media, where the campaign would routinely top trending hashtags, media played a pivotal role in amplifying the campaign’s message, ensuring that newspapers and television stations carried weekly articles throughout the winter of 2022. This was further facilitated by Media company Msix. They were able to secure almost £600K of free inventory across national newspapers and other media in support of the campaign. In addition they were able to create a number of emotive social media posts that shared the personal story of many individuals who had no option but to continue to isolate” see films [HERE].
One of the most significant moments in the campaign was the first major patient pandemic protest, on the 26th of October 2022. In a vigil held outside the Houses of Parliament, over 150 relatives of the immunocompromised stood in silence to represent the unheard voices of the immunocompromised and hold up placards of their family members, who were still in isolation at home to demonstrate the impact of poor decision making and bad policy. During this event, TV crews talked to family members and a TV vans circulated around parliament square further emphasising the importance of the vigil to people passing by. A large number of MPS attended the vigil to speak to the family members and hear the plight of the immunocompromised, compelling health officials to reconsider their stance.
The campaign’s materials were showcased in exhibitions by museums across the UK, including the Oxford History Science Museum, emphasising the importance of governments listening to vulnerable patients during the pandemic, the the outpouring of frustration, grief and disbelief in the premature cessation of efforts to protect the vulnerable.
This movement additionally found champions within Independent SAGE, the most vocal and prominent UK independent scientific group, significantly elevanting the plight of immunocompromised patients. Furthermore, a weekly podcast hosted by Clare English provided a lifeline, connecting hundreds of isolated patients and offering peer support during their darkest hours.
The campaign highlighted critical flaws within some aspects of the NHS, shedding light on temporary pandemic committees with little notable expertise, such as Rapid-C19 that kept no minutes and struggled to assess clinical needs adequately. These committees made several erroneous large-volume purchases of drugs, many of which were not needed, rapidly became ineffective, or were too complex to administer.
The Forgotten 500k Campaign had a profound impact on patient awareness, prompting other countries, particularly in the Middle East, to take swift action to protect their immunocompromised patients. By December 2022, UK patients gained access to Evusheld in the private sector, and AstraZeneca introduced a new global drug authorization and usage category specifically for immunocompromised patients. In later years, following the acceptance of very high levels of patient and clinical interest to protect immunocompromised patients, pharmaceutical companies have pledged to invest into a whole raft of drug development pipelines to prevent bacterial, viral and fungal infections in immunocompromised patients.
Furthermore, the campaign directly led to the creation of global organisations dedicated to safeguarding immunocompromised patients. The Global Immunocompromised Health Coalition and the patient-led International Immunocompromised Advocacy Network (IIAN) are just two examples of the enduring legacy of the Forgotten 500k Campaign. These groups have pledged to ensure that immunocompromised patients can speak strongly with one voice across all nations, and their needs and lives can no longer be forgotten.
In its wake, this ongoing campaign stands as a testament to the power of determined individuals working together to achieve and effect positive change, not only for themselves but for countless others around the world during this midst of the pandemic. The Forgotten 500k Campaign contains to advance the needs for immunocompromised patients in the UK and has made a significant step towards patient equality, highlighting the importance of listening to those who need it most, especially during times of crisis.