Webinar 1: Patient advocacy on AMR in the EU: Where do we begin?

On 20 June 2024, EPF and The AMR Narrative hosted this first webinar to provide a platform for dialogue and connection between patient groups to encourage advocacy efforts on AMR.

Patients are on the front line in the fight against antimicrobial resistance (AMR). They spend time in healthcare settings where resistant bacteria occur and spread, undergo routine healthcare procedures that require antibiotics, and are more susceptible to infections due to weakened immune systems and invasive procedures.

This makes it all the more important for patients to engage in the fight against AMR. To this end, the first webinar in a series of three webinars jointly organised by the European Patients’ Forum and The AMR Narrative, provided a platform for dialogue and connection between patient groups to encourage advocacy efforts on AMR.

Watch the webinar recording here.  

Speakers: 

• Francesca Chiara (Chair of the Board of Trustees, The AMR Narrative) 
• Claudia Louati (Head of Policy, EPF) 
• Dr. Dominique Monnet (Head of Section AMR and HAI, European Centre for Disease Prevention and Control - ECDC) 
• Ella Balasa (Cystic Fibrosis and AMR survivor) 
• Vanessa Carter (Executive Director of the AMR Narrative and Chair of the WHO Task Force of AMR Survivors) 
• Mary Lynne Van Poelgeest-Pomfret (President of World Federation of Incontinence and Pelvic Problems) 
• Gavin Schranz (WHO Europe Youth4Health Network Member)  

What is AMR and where do we stand in the EU?

The first session provided an overview of AMR and was led by Dr. Dominique Monnet, Head of the Antimicrobial resistance and healthcare-associated infections programme, at the European Centre for Disease Prevention and Control. He defined AMR as "the ability of micro-organisms to resist antimicrobial treatments".

Dr. Monnet drew attention to the burden of AMR and the measures that patients, healthcare professionals, and the general public can take to prevent and control AMR. These include using antibiotics only when necessary, hand hygiene, promoting vaccination, and using rapid diagnostic tests to optimise treatment.

Dr. Monnet also highlighted the complexity of the term AMR, which is not well-understood in the general public, and to a greater extent the complexity of communicating about AMR. “AMR is not a big wave, not a tsunami, and that is another reason why it is difficult to communicate about AMR. AMR is more like a slowly rising sea level from one year to the next. It's not like the COVID-19 pandemic, where the situation changed within a few months”.

How does AMR affect patients?

In a video message, Ella Balasa (AMR survivor, USA) recounted her battle with AMR while suffering from cystic fibrosis[1] a disease that made her more vulnerable to chronic infections and for which she had to use "countless rounds of antibiotics over many weeks". Over time, she found that her antibiotics became less effective and her infections more difficult to treat. She highlighted the importance of patient awareness of new therapies such as phage therapy, which are not accessible everywhere. 

Mary Lynne Van Poelgeest-Pomfret (Netherlands)’s family was directly affected by AMR. As President of the World Federation of Incontinence and Pelvic Problems, she is very concerned about the "harmful effects of overuse of antibiotics" as urinary tract infections, a very prevalent issue in WFIPP patient community, become harder to treat. 

Vanessa Carter, Executive Director of The AMR Narrative and Chair of the WHO Task Force on AMR Survivors, suffered from a drug resistant hospital-associated infection due to methicillin-resistant staphylococcus aureus (MRSA),  which forced her to undergo surgery and facial reconstruction over ten years. She experienced first hand the lack of information about AMR and of integrated care pathways.

Krista Bracke, Journalist and Patient Advocate, Global Sepsis Alliance, was infected with streptococcus spigene bacteria and had sepsis[2]. The consequences were severe: a double below knee amputation, a reconstructed right hand and cognitive problems. She shares the concern about the lack of awareness, which remains high for sepsis.

Gavin Schranz (WHO Youth4Health Network member, Malta) has been a renal patient since birth and had to undergo multiple surgeries. He is currently awaiting a kidney transplant from his mother. He became an advocate to fight the stigma patients often face. His condition made him particularly aware of AMR and of the need to preserve the efficacy of antibiotics to ensure transplant surgery remains safe.  

All speakers’ lived experience has led them to become patient advocates and to contribute to raising the patient voice on the important topic of AMR.

What can be done to improve patient advocacy on AMR?

M-L. Van Poelgeest-Pomfret stressed the need for a more unified approach as current initiatives, which are sometimes fragmented, "dilute the impact" of patient advocacy on AMR. To achieve this, she suggested easy-to-understand communication about AMR by avoiding jargon and engaging with scientific societies and the media at all levels, as has proved effective in the field of incontinence advocacy.

As a former journalist herself, K. Bracke suggested creating a multi-stakeholder dialogue with patients, clinicians, policymakers, industry and journalists – journalists played an important role in raising awareness of sepsis in Belgium and Sweden through podcasts and articles.

1. Schranz emphasised the role of storytelling: "we are inundated with data, information and reports. Storytelling and a personal touch allow people to identify with the person". For example, V. Carter began her advocacy career with a blog about her own experience. She recalled that patient advocates shouldn’t be afraid to ‘start small’; the blog was a first step that led her, years later, to become involved in conversations about AMR at a global level.

In addition, Vanessa mentioned mentorship programmes as an effective tool to promote knowledge sharing, skills development and empower advocates to influence policy and public awareness. Capacity building among patients and other stakeholders to improve participation and mobilise action is one of the priorities of her charity, The AMR Narrative.  

What is next?

The speakers concluded that boosting patient advocacy on AMR begins with the dissemination of information to patient groups and civil society. Organising such webinars is a first step towards greater awareness and mobilisation.

• Webinar 2: How do we use our voices to reach a wider community for AMR? (29 August, 3pm CEST)
• Webinar 3: How can we take AMR advocacy to the next level, including policymaking? (12 September, 3pm CEST)

[1] A progressive genetic disease that affects the lungs, pancreas and other organs

[2] A condition in which the body reacts inappropriately to an infection, the infection-fighting processes turn against the body, causing organs to malfunction