Webinar 3: How can we take AMR advocacy to the next level, including policymaking?

On 12 September 2024, EPF and The AMR Narrative hosted a third webinar to provide a platform for dialogue and connection between patient groups and stakeholders to encourage advocacy efforts on AMR.

Watch the recording here.  

Speakers: 

• Francesca Chiara, Chair of the Board of Trustees, The AMR Narrative
• Elena Balestra, Head of Governance, Membership and Capacity Building, European Patients’ Forum
• Vanessa Carter, Chair, WHO Task Force of AMR Survivors, Executive Director, The AMR Narrative
• John Kariuki, Bloodstream infection survivor, WHO Taskforce of AMR survivors
• Rob Purdie, Antifungal resistance survivor, Founder of MyCARE
• Hana Bartakova, Interim Director, Health First Europe & AMR Patient Group
• Dr. Malin Grape, Sweden’s AMR Ambassador, Swedish Ministry of Health and Social Affairs
• Antonella Cardone, CEO, Cancer Patients Europe
• Diane Shader Smith​, Communications Professional and AMR Advocate​

 Patient survivor stories and introduction to the WHO Taskforce of AMR survivors

Vanessa Carter, in her capacity as Chair, presented the WHO Task Force of AMR Survivors. This task force brings together 12 survivors with different experiences of AMR from different countries (Zimbabwe, Lebanon, United Kingdom, etc.). The aim is to put a human face on the problem, beyond the statistics. The task force has produced a number of documents, including a guidance note designed to show patients how they can get involved in the AMR debate across policy development, publications, medical conferences, research and development, etc.

John Kariuki told his personal story of AMR, namely an accidental fall that led to surgery and a five-month hospital stay. Based on a lab test, only one antimicrobial out of 18 could work for him. He described the personal impacts of his experience, including health & wellbeing consequences (‘I used to play football, now I can only watch’) and the economic cost ($35,000 hospital stay). In 2021, he took part in World Antimicrobial Awareness Week for the first time, during which he told his story, and in 2023 he joined the WHO Task Force of AMR Survivors.

Rob Purdie was diagnosed with cryptococcal meningitis - the most severe form of intestinal fever. “My experience of AMR was not caused by an accident or injury. It was caused by a fungus that is constantly inhaled in large parts of the world, so all I did is to take a breath”. He started with antifungals, experienced failure of three different pills before he was prescribed a combination of two therapies that succeeded in controlling the fungal infection. As a patient, he struggled with depression and isolation and his partner had panic attacks. His journey as a patient advocate began simply by contacting his doctor and local representative to ask how he could get involved. Along the way, he became convinced that there were many lessons to be learned from the AIDS epidemic of the 1980s and 1990s. When the patients became involved, the AIDS epidemic suddenly received much more attention.

How to create policy change through patient advocacy

To convince policy-makers, Diane Shader Smith​ (Communications Professional and AMR Advocate​) stressed the importance of patient stories and, above all, how to tell them. “A lot of people have very convincing stories, but they don't know how to tell them. If someone wants to become a patient advocate, I would recommend that they learn to tell their story in a way that's not just about facts and figures, but about emotions - who you are as a person, what you're losing...”. Diane also raised the question of cause of death which hides the reality of AMR. “My daughter's death was recorded on her death certificate as being due to cystic fibrosis, but what killed her was a superbug”. She added that it is important for AMR survivors to speak up, but that people must realise that AMR also leads to death, so they understand the seriousness of the situation.

This point was echoed by Antonella Cardone. She presented the links between cancer and AMR - for example, 50% of cancer patient deaths are linked directly or indirectly to infection - and how AMR could threaten cancer treatments - for example, chemotherapy could become unviable due to AMR. For this reason, she hoped that AMR and the fight against cancer would not operate in silos, as this would limit their combined impact.  As cancer is often presented as an example of successful patient advocacy, Antonella made a few suggestions. She insisted on the need to position AMR as a health crisis and to adopt a multi-stakeholder approach that would result, for example, in a patient-led white paper, with a call to action and the endorsement of MEPs.

Hana Bartakova also supported the need for patient organisations to break silos, which was the reason for the creation of the AMR Patient Group. She has met many patient groups representing cancer patients, patients with respiratory problems, etc., who deal with AMR but for whom this is not the main focus. The basic idea behind the AMR Patient Group was to show that “AMR is a problem in itself and not an unnamed cause of another pathology”. To this end, the AMR patient group collected patient testimonials to create an emotional link with the public and developed some technical knowledge to better inform patients.

The discussion focused on how to bring about policy change. As a policy-maker, Dr Malin Grape pointed out that a policy or action plan is of little value if it has not been developed in collaboration with those affected, particularly patients. Asked what policy-makers need from patient organisations, she suggested that healthcare professionals and patient organisations could carry out joint advocacy on certain issues. “Patients and healthcare professionals could work more closely together on certain issues (diagnosis, treatment, etc.), as they have different points of view on the same issues”. Finally, Malin reminded us of the awareness-raising work that still needs to be done and indicated that one advocacy objectives could be to make political decision-makers understand that everyone is exposed to the risk of AMR.