In February 2024, the AMR Patient Group was invited to participate in two important events on the most recent actions undertaken by the EU against antimicrobial resistance proposed under the One Health approach. Launched in 2017, the One Health approach aims to combat AMR by addressing human, animal, and environmental health together, recognizing their interconnectedness and the need to maximize synergies for an effective response against AMR.

As representatives of European AMR patients, we first attended the kick-off meeting of the second European Union Joint Action on Antimicrobial Resistance and Healthcare-Associated Infections, also known as EU-JAMRAI 2, which took place on 13th February in Paris. Following the successful results of the first EU-JAMRAI, the EU project will now gather 30 countries across Europe (EU27 together with Iceland, Norway and Ukraine) and more than 120 partners worldwide to take concrete actions to tackle AMR through a four-year funded program.

Its main objective is to enhance the capacity of the participating states to prevent and control AMR and HAIs by fostering collaboration in capacity building, inter-sectoral action, support of national activities and education training under the 50 million euros grant from the European Commission.

The AMR Patient Group will contribute as a stakeholder of EU-JAMRAI 2 by representing patient voices during internal consultations and actively engaging in raising awareness about the dangers of resistant microbials and the importance of responsible antibiotic usage among European citizens.

During the meeting, we called for a more concrete involvement of AMR patients in the development of rapid, effective, and sustainable solutions against AMR, starting from the very first steps of solutions development. We raised this question to the panelists, suggesting a bigger role for patients not to feel isolated or involved only at later stages, but to fully participate in activities led by institutions, research centres, industry, representing those affected by the cross-border threat of AMR.

On the 29th of February, AMR patients' voices were also represented at the AMR One Health Network meeting chaired by the European Commission in Brussels. We were invited to discuss updates on ongoing actions against AMR under a comprehensive strategy along with other high-level representatives and leaders in the field. The meeting touched upon latest developments in research and monitoring, the state of play of the Council's recommendations, and various other initiatives involving inter-sectoral professionals.

In the past weeks, we were more than happy to join a first-hand commitment in the united action against AMR, reflecting the fundamental essence of the One Health approach. Only through joint efforts we can reach the 2030 targets set by the Council's recommendations and to mitigate the impact of AMR causing 35,000 deaths each year in the EU/EEA and affecting 1.3 million people globally.

We are happy and encouraged to see that the fight against AMR is gaining such momentum and we hope that it will remain on the top of the priority list after the European elections. Our task to represent patients' voices, sharing their stories and making them a fully integrated actor in this fight is as relevant as ever and we are proud to be able to take this journey together with our members, supporters and associates.

The European AMR Patient Group is delighted to have received the opportunity to share and advocate for the empowerment of AMR patients and their early involvement in the development of concrete, suitable, and efficient solutions to fight against antimicrobial resistance in Europe.

With our efforts, we aim to address the gap in awareness about the danger of antibiotic misuse and the lack of effective infection prevention measures, as highlighted in the article by Global Cause UK on How to Translate AMR Awareness into Decisive Strategies and Efficient Solutions.

As the AMR Patient Group, we demand clear governance arrangements and actionable initiatives to spread awareness and improve prevention and control measures, along with encouraging investment in new antibiotics and medical technologies. Decision-makers should commit to addressing the daily risks patients across all of Europe face from resistant microbes, as AMR knows no borders. To do so, we fully support the One Health approach, which embraces a holistic health perspective spanning human, animal, and environmental health.

Special thanks to Menarini Group for the opportunity to provide our support in raising awareness about the AMR silent pandemic and the impact of antibiotic resistance on patients and their loved ones.

On the occasion of the European Antibiotic Awareness Day (EAAD) and the World Antimicrobial Resistance (AMR) Awareness Week (WAAW) 2023, we collected the stories of three AMR patients from our network. Their stories share their perspectives, emotions, and invite us all to reflect on the impact of antimicrobial resistance on our lives and the lives of our families. Faced with the fight against resistant bacteria, Iñaki, Sonia, and Guillem explain their stories of resilience in the face of obstacles and limitations caused by resistant bacteria.

Iñaki Morán - Founder and President of EPOC ESPAÑA 

I am a bipulmonary transplant recipient due to a chronic and incapacitating respiratory pathology (COPD), which affects about 3 million people in Spain. Living with a chronic respiratory disease means I experience constant ups and downs, not only in my respiratory system but also in my emotional well-being. 

I was diagnosed with COPD in 2008, even though I had never smoked. Since 2013 until my transplant in 2019, I was forced to fight against COPD and add another challenge: antimicrobial resistance (AMR). 

The truth is that initially I did not give it much importance, although later AMR ended up becoming the cause of countless exacerbations, hospital admissions, home hospitalizations, and accelerated loss of lung capacity. 

I have suffered from stenotrophomonas maltophilia, pseudomonas aeruginosa, achromobacter xylosoxidans - all multiresistant bacteria that made my life tremendously difficult during those years, due to the deterioration of my health and how it affected me and my family emotionally. 

Honestly, I don’t even remember the number of admissions and hospitalizations, but I do remember the constant feeling of helplessness due to the appearance and reappearance of infections.  

Respiratory patients are particularly harmed by respiratory infections, especially when it comes to resistant bacteria forcing patients to undergo harsh antibiotic treatment every time the colony reactivates.  

Antimicrobial resistance is the cause of 35,000 deaths per year in Europe.  

I have had the immense fortune of receiving a second chance, and from my privileged position, I would like to say that winning the battle against superbugs shouldn’t be a question of being fortunate. Not even the result of living in a country with access to surgical interventions such as the one that saved my life. We need to invest more in research, education, training, prevention, and best practices in hospitals and at home to protect ourselves from infections caused by viruses, bacteria, fungi, or parasites. 

AMR is a global problem that requires global solutions. 

Sonia Sánchez - AMR Patient from Spain 

My journey began around the age of 36 when I noticed increased fatigue while playing or running after my 4-year-old daughter.  As a smoker since my youth, coupled with poorly managed bronchitis that eventually became chronic, I decided to consult a pulmonologist at the age of 38. At first, he attributed my symptoms to smoking without much concern. 

Four years later, I switched pulmonologists and underwent necessary tests, revealing a diagnosis of moderate/severe COPD, leaning more towards the severe end. Despite my attempts, quitting smoking remained a struggle, leading to 10 to 12 relapses annually with the need for antibiotics. 

In 2008, after successfully abstaining from smoking for six months, the sudden death of my mother caused a relapse. This time, quitting smoking was particularly challenging, leading to the development of severe COPD. After enduring years of waiting, including a battle with cancer, I reached 2021 when I underwent a bipulmonary transplant with only 17% lung capacity.  

I caught a resistant bacterium in the operating room during my transplant. I spent a whole month on antibiotics to get rid of it. 

The thing that scared me the most was that life is put on hold while the drugs you are being given by medical professionals and exert are ineffective. It is true that AMR patients frequently experience a sense of guilt and helplessness, making the fight a difficult journey.  

This is exactly why patient associations are fundamental for support and informational network. There is a need for a greater involvement of the community to raise awareness about antimicrobial resistance and its risks to local communities. The support they can provide for patients for me, the feeling to be understand, and the network they can provide are invaluable for patients like me. 

Overall, the two years post-transplant have brought about a radical transformation in my life. It has been the best thing that could have happened to me. 

Guillem Cuartero - AMR Patient from Spain 

When I was 19 years old, I contracted severe mononucleosis, and the infection originated in my right angina.  

I was placed in an induced coma for 52 days and underwent multiple surgeries, narrowly avoiding the loss of my right arm. Additionally, I developed thrombosis in my left leg, resulting in lasting effects. The surgeries left me with scars from burns, and I now have a 56% physical disability. 

For 8 months, I underwent daily rehabilitation, working 5 hours a day, until I could walk again and resume my life. Although I cannot make up for the time I spent in a coma, I am still persevering. 

Recently, I faced hospitalization due to phlebitis in the affected leg. A virus resembling insect bites manifested on my skin, with one of them becoming infected, allowing the virus to enter and cause an infection. Fortunately, I am now on the path to recovery and resuming my daily life. 

This experience has taught me the critical lesson of never letting one's guard down. Any infection, regardless of its apparent insignificance, should be promptly addressed and evaluated by a medical professional

I extend my greetings and encouragement to all those who have undergone similar unfortunate experiences. 

The European AMR Patients Group would like to thank Iñaki, Sonia, and Guillem for sharing their personal stories and the impact that AMR had on their lives and the lives of their loved ones. We would also like to express our gratitude to EPOC España for their broader support in our work.

Please find here our digital awareness campaign in occasion of the EAAD and WAAW 2023.

Don’t hesitate to contact us at:

The European AMR Patient Group together with the Foro Español de Pacientes organised a high-level event on Antimicrobial Resistance on the 19th of September 2023, at the European parliament Local Office in Madrid. The purpose of the event was to gather EU policymakers, doctors, nurses and patients to discuss the alarming situation around AMR in EU in general and in Spain in particular. Organised at the occasion of the Spanish presidency, the event was web streamed and gathered about 70 participants on-site and on-line.  

The purpose of this event was to improve awareness and understanding of AMR, to strengthen ongoing activities on AMR and to advance solutions on how to address it, particularly prevention measures which should be further adopted by patients and healthcare professionals alike, improving outcomes for individuals and for society.  

The focus was put on the urgency to deal with the AMR “silent pandemic” on European and global levels, underlining the importance of the One Health approach. Prevention, screening systems, precise medication and, most importantly, the spreading of the awareness among patients and healthcare professionals were identified as key elements by the speakers.  

Main takeaways from speakers 

Lina Gálvez, MEP, S&D  

Antimicrobial Resistance in Spain: setting the scene  

Dr. Dominique Monnet, Head of Section, AMR and Healthcare Associated Infections, European Centre for Disease Prevention and Control 

The European response: EU actions and updates  

Stefan Schreck, Adviser for stakeholder relations, DG SANTE, European Commission  

Most relevant initiatives at EU level to tackle the AMR issue:  

The patient perspective in the fight against AMR in Spain  

Andoni Lorenzo Garmendia, President, Spanish Patient Forum (FEP) 

Sonia Sánchez, Patient - Represeting Iñaki Morán, founder and president of EPOC ESPAÑA (National Association of COPD patients and caregivers) 

Antimicrobial resistance in primary care and intensive care settings 

Dr. Vincente Olmo Quintana, Secretary of the Working Group on Medicines Management, Clinical Inertia and Patient Safety, Spanish Primary Care Doctors’ Association (SEMERGEN) 

Dr. María Cruz Soriano Cuesta, intensive care doctor at the Ramón y Cajal Hospital in Madrid, Spanish Society of Intensive and Critical Medicine and Coronary Units (SEMICYUC) 

Medical innovation to fight AMR and infections  

Jessica Imbert, Director External Affairs, MedTech Europe 

Priorities of the Spanish Presidency of the EU Council  

 Ricardo Carapeto García, Head of Area Environmental Risk Assessment, (Veterinary), Spanish Agency of Medicines and Medical Products (AEMPS). Coordination Unit of the National Plan on Antimicrobial Resistance (PRAN) 

In conclusion  

We can see a significant increase in the number of infections and attributable deaths for almost all bacterium–antibiotic resistance combinations, especially in healthcare settings. 35 000 people die annually in the EU due to AMR complications. To stop this trend and see these numbers decrease, a holistic approach with global solutions is needed.  

AMR is an issue that doesn’t discriminate, concerns every European citizen and needs to be tackled using the One Health approach.
National plans need to be supported and reinforced at European level and with European funding. Governments, authorities, healthcare workers and researchers, pharmaceutical and MedTech companies as well as EU citizens need to work hand in hand to spread awareness, share best practices and concrete solutions to stop this “silent pandemic”.  

The list of national and European initiatives is long which is a very encouraging fact, but there is an urgent need to roll out concrete solution on the global scale, boost prevention, preparedness, thorough screenings in hospitals to allow for adequate medication prescription and especially concentrate on research to increase availability of antibiotics and develop new ones. 

The European AMR Patients Group together with the Foro Español de Pacientes would like to thank all of our esteemed speakers for sharing their views and expertise and proposing solutions to this paramount issue. We would also like to thank all of the participants and we invite you to reach out to us if you would like to have more information about the event or the European AMR Patients group work.  Don’t hesitate to contact us at:

On Thursday 27 October 2022, Health First Europe’s European Patient Group on Antimicrobial Resistance organised a Parliament Roundtable Debate under the title “Engaging with patients and closing knowledge gaps to fight antimicrobial resistance: the role in infection prevention and antimicrobial stewardship”. The event took place in the European Parliament, hosted by MEP Ondřej Knotek (Renew Europe, Czech Republic) and held under the patronage of the Czech Presidency of the Council. 

Dr Roberto Bertollini, President of Health First Europe, kicked off the event by describing antimicrobial resistance as one of the major issues that the public health community will face in the next few years. He warned that without proper solutions, common illnesses might become untreatable or only treatable with a significant risk to the patient. On top of the human suffering AMR causes, Dr Bertollini also highlighted the significant economic costs it causes. By 2030, the World Bank estimates a $3.4 trillion global GDP fall due to AMR and its consequences among the population. He then welcomed the speakers and asked them to reflect on past experiences dealing with AMR to help identify lessons for the future.

This introduction was followed by a message from MEP Knotek, who further underlined that the inappropriate use of antibiotics leads to the development of a “silent pandemic”. He called for AMR to be addressed at every level, asking EU and global institutions to continue monitoring it and to issue recommendations on how to tackle it. He also commended the work of the members of the AMR Patient Group. He asked authorities to work with them to bridge the knowledge gap on the use of antibiotics among citizens at the local level.

After these introductory interventions, Dr Andrea Ammon, Director of the European Centre for Disease Prevention and Control (ECDC) set the scene for the exchange by sharing some key facts about AMR in Europe at present. Dr Ammon mentioned that while antibiotic consumption and AMR decreased in 2020 as a result of the exceptional measures taken to control Covid-19, there are still high levels of resistance for several important bacterial species-antimicrobial group combinations. She pointed out that the burden of AMR remains very high, as it is similar to the burden of influenza, tuberculosis and HIV/AIDS combined. According to ECDC estimates, 70% of this burden is related to health care-associated infections. Dr Ammon added that the ECDC is working with other global and EU-institutions and Member States towards finding solutions. For instance, the ECDC supports national AMR reference laboratories in building capacity on whole genome sequencing to integrate it as part of AMR surveillance, which has greatly helped the ECDC’s risk assessments. Furthermore, in cooperation with the European Commission’s Directorate General for Health and Food Safety (DG SANTE), they undertake joint One Health country visits to interested Member States. This helps them identify areas of improvement in their human and animal health sectors, which they use for national actions plans.

Dr Ammon finished her intervention by asking participants to mark the 15th European Antibiotic Awareness Day on 18November under the theme “Preventing Antibiotic Resistance Together”, which highlights everyone’s important role in this fight.

In line with this Call for Action, Céline Ledoux and Julia Langer, from DG SANTE, then presented the latest actions the EU has taken in the fight against AMR. They both underlined the Commission’s One Health approach to AMR, which acknowledges that efforts are needed across sectors (i.e., human, animal, and environmental health) to address the AMR crisis adequately. Ms Ledoux emphasised that the upcoming Proposal for a Council Recommendation on AMR, planned for the beginning of 2023, will use the lessons learnt from the 2017 EU One Action Plan against AMR, extending and complementing it. Ms Langer remarked that the European Health Union initiative reinforces the EU’s role in addressing AMR.  This initiative includes the revised legislation on cross-border health threats, recently adopted by the Council; the extension of the mandate of the ECDC; and the creation of the Health Emergency Preparedness and Response Authority (HERA). Moreover, she added that the revised Pharmaceutical Strategy for Europe includes measures for the prudent use of antimicrobials and explores options for developing new antimicrobials addressing AMR.

The presentations from EU representatives were followed by an address from Dr Malin Grape, Sweden’s Ambassador on Antimicrobial Resistance. Dr Grape presented the Swedish experience with AMR and the country’s plans for its forthcoming Presidency of the Council of the EU in the first half of 2023. She explained that her country’s Public Health Agency and the Board of Agriculture have been spearheading intersectoral cooperation since 2012 to address the development of resistance.  Cooperation between the local, national, and international governance levels plays a key role in Sweden’s actions on AMR. She highlighted the importance of integrating surveillance, stewardship, and infection control. She then presented Sweden’s national stewardship programme, known as Strama, which among other measures, includes monitoring prescriptions of antibiotics, sets national targets, and ensures both a bottom-up and a peer-to-peer approach. When Sweden takes the helm of the Council, they will continue the work on the AMR policy package, and on the Strategy for Global Health, which will strengthen EU leadership worldwide.

Following the institutional panel, attendees heard the emotional testimony of patient advocates. Ms Vanessa Carter, a South African Patient Advocate for Antimicrobial Resistance who suffered a resistant infection after being a victim of a car accident, shared her personal story of dealing with AMR. She is actively engaged with the WHO, the Africa Centres for Disease Control and Prevention, and other institutions in educating patients about AMR. Mr Jonathan Pearce, CEO of the Antibiotic Resistance UK charity, also provided examples of patient stories and highlighted the work he does in the UK as the only UK patient support service for patients with AMR and their families. Both speakers called for greater support for victims of resistant infections and asked the institutions to improve communication on the topic, as well as research, infection prevention, and antibiotic stewardship actions at every level.

The patients’ perspective part of the event was complemented with the healthcare professionals’ point of view. Dr Christiaan Keijzer, President of the Standing Committee of European Doctors (CPME), spoke on their behalf. He stated that while doctors have a basic knowledge about the prudent use of antibiotics and the risk of resistance, they often lack resources or time to provide appropriate advice to their patients. He emphasised the need to increase the uptake of antibiotic stewardship teams so that information about antibiotics is passed on to healthcare professionals and patients in a more systematic way. He argued that national guidelines on antibiotics must enshrine that doctors diagnose the patient in person before prescribing antibiotics, performing a clinical and diagnostic examination before initiating therapy. Doctors should ascertain that the patient most probably has a bacterial infection, and a real effect can be expected by treatment with antibiotics. Finally, they must choose as specific a narrow-spectrum antibiotics as possible as first choice.

Subsequently and in line with Dr Keijzer’s arguments, Miriam D’Ambrosio, External Affairs – Manager Communications at MedTech Europe, stressed that the effective use of diagnostic tests and medical devices can help address these health challenges throughout the entire patient pathway: before admission to the hospital or in the community, at the arrival at the ward, in the operating room, during the hospital stay and recovery, and when the patient is discharged and sent back home.

Furthermore, she emphasised that behavioural change and strict adherence to clear guidelines are needed to reduce antibiotic demand. Medical technologies give specific guidance on how to prevent and control infections. If effectively implemented, the medical technology solutions address the spreading of infections by detecting and identifying bacterial infection and the susceptibility to medication, monitoring and tracking resistance, management, and containment outbreaks. Finally, Ms D’Ambrosio called for more coordination between stakeholders to address this global health threat.

Throughout the event, attendees had the chance to participate in an online poll about AMR. The majority identified a lack of information as the main reason citizens are unaware about AMR. Most of them held that the use of antibiotics by GPs and patient self-medication are the main areas to target to successfully slow the development of resistance. In addition, participants said that further training of healthcare professionals is key to combat AMR in their local communities.

In conclusion, the event revealed that AMR is a topic that raises interest from a wide array of stakeholders, who are making their contributions within their capacities to better address this silent pandemic. Better coordination is needed between global, EU, national, and local authorities as well as with patient representatives who have a direct impact in their communities. Infection prevention was mentioned by keynote speakers and attendees as a key aspect of the fight against AMR. Better prevention measures can be adopted by patients and healthcare professionals alike, improving outcomes for individuals and for society as a whole. The debate was an excellent opportunity to learn from each other and to create bridges between all actors, setting the foundations for future cooperation across Europe.

Presentation - AMR event 27 October 2022

On this World Patient Safety Day 2022, we are reminded of how unsafe medical practices can exacerbate existing medical conditions or even create additional health issues. This is particularly the case in the use of medication, where errors can significantly harm patients. This year, the WHO has chosen the slogan “Medication without harm” to raise awareness about this major problem, and the circumstances and conditions that give rise to it. These include poor training of both of healthcare professionals and patients, staff shortages, and a lack of infection prevention and control measures, among other factors.[1]

One of the most far-reaching and impactful consequences of these errors, to a large extent, is Antimicrobial Resistance (AMR), where the inappropriate use of antibiotics leads to bacteria becoming resistant to them. This makes regular medical interventions increasingly dangerous, in particular intensive care, cancer treatment, and organ transplantation.[2] The development of so-called “superbugs”, bacteria resistant to the most used antibiotics, represents a threat to modern medicine and could go so far as to push back decades of medical advances.  AMR does not discriminate in its potential to harm patients: complications from drug-resistant bacteria can affect anyone, no matter their health status, of any age, and in any country, leading to increased medical costs, prolonged hospital stays, greater demands on healthcare infrastructure and capacity, and increased mortality.[3] This is to say nothing of the implications of AMR beyond human health: resistance can build as medication cycles across humans, animals, and the environment, with antibiotics in livestock and in agricultural uses contributing to AMR in humans and vice versa.

Several factors lead to this misuse or overuse of antibiotics. To begin with, there is a general lack of awareness among the public. A 2015 WHO survey conducted in 12 countries revealed that while 64% of people knew about antimicrobial resistance, around the same number incorrectly believed antibiotics can be used to treat colds and flu.[4] As viral infections, antibiotics have no effect as the health of the patient is concerned – although attempting to treat viruses with antibiotics does exacerbate AMR. Additionally, while most healthcare professionals are aware of the risk of excessive antimicrobial use, there are still some gaps. A 2019 ECDC survey showed that only 75% of healthcare professionals were aware of the link between treatment with antibiotics and an increased risk of antibiotic-resistant infection. Many also recognised that they have prescribed antibiotics to patients when they would have preferred not to, for “fear of patient deterioration” or “fear of complications”.[5]

Several measures need to be implemented urgently to address this truly global public health threat. First, better infection prevention measures are needed. During the Covid-19 pandemic, citizens around the world came to realise the importance of their own actions in preventing infections, and how individual efforts can make a widely felt difference. Similar measures to the ones taken during that health emergency, building on this awareness and sense of shared mobilisation, can also be applied to AMR. First, better hand hygiene, particularly in healthcare settings, is essential. Local advocacy groups, working together with healthcare professionals, should help create and disseminate checklists with key hygiene measures that can easily be followed by everyone. Second, to avoid unnecessary consumption of antibiotics, healthcare professionals should make sure that a specific antibiotic is needed before prescribing it when a patient shows symptoms of infection. A better use of point-of-care rapid testing could reassure them about whether and which antibiotics are needed. Existing medical technologies are already effective in determining the relevant pathogen, but further investment is necessary to make them even more accurate and to reduce the instances of healthcare professionals who felt compelled to unnecessarily prescribe out of fear or uncertainty. Finally, awareness raising among the public is also indispensable. If patients are better informed, they will be aware that they should only be taking antibiotics if prescribed to them and in the manner prescribed to them (i.e., they should follow the antibiotic treatment as prescribed, not stop it prematurely once the symptoms disappear).

AMR is a serious health concern, but it is one where greater leadership from policy makers, healthcare professionals, and patient advocates can help reduce harm, improve outcomes, and make global progress.  World Patient Safety Day remains a positive occasion to reflect on where that leadership is most needed and what we can do to find solutions that would help everyone address the major public health threat that Antimicrobial Resistance represents. In Europe, both the EU and Member States, together with all relevant stakeholders, should work together to find a common approach to urgently address this problem, doing the necessary work to raise awareness and promote best practices, gathering and sharing key health data, and endorsing a comprehensive “One Health” approach that brings all sectors together.






Press release

Brussels, 28 June 2022

The European Patient Group on Antimicrobial Resistance is happy to announce its new visual identity and its new website: Given the growth of the group in the past few months with new patient organisations joining it from all over Europe, we are excited to present a new rebranding to consolidate their work.

The patient group, through its various advocacy and communication activities, will continue to advocate for effective measures to address the threat of Antimicrobial Resistance. Our recent contribution to the European Commission’s Call for Evidence for a Recommendation for Further Action on Antimicrobial Resistance summarises our main policy proposals, that include raising awareness about AMR and healthcare-associated-infections (HAIs), improving infection prevention and control measures, empowering patients through stewardship programmes, and investing in medical technologies to prevent AMR and HAIs.

To ensure action is taken at every governance level in Europe, we are organising a Parliamentary Roundtable Debate in October with stakeholders from the EU institutions, member states, healthcare professionals and, most importantly, patient representatives. It will be titled “Engaging with patients and closing knowledge gaps to fight antimicrobial resistance: the role in infection prevention and antimicrobial stewardship” and will be a hybrid event to boost participation and availability so any person can follow it. More information on this will be coming soon and we look forward to putting together this exciting event.

About the European Patient Group on Antimicrobial Resistance

The first European AMR Patient Group was officially launched on the 18th November 2020 to coincide with European Antibiotic Awareness Day 2020 and World Antimicrobial Awareness Week (18-24 November). The AMR Patient Group is an initiative by Health First Europe and is comprised of national patient associations from across Europe. The group aims to address the gap in awareness at the patient-level about the danger of antibiotic misuse and the lack of effective infection prevention measures. The AMR Patient Group will empower patients across Europe with the necessary knowledge about antimicrobial resistance so that everyone understands when it is appropriate to take antibiotics and how to take them responsibly.

If you are interested in our activities or want to join the European AMR Patient Group, please contact us at

Author: Ilaria Galetti, Vice President GILS ODV – Gruppo Italiano per la Lotta alla Sclerodermia.

Milan, Spring 1996. I was studying at the University, in an ancient cloister, when I noticed the first sign of the disease that would be my unfriendly and undesired partner of my life: systemic sclerosis, also known as scleroderma. Systemic sclerosis is a rare, autoimmune, and very complex condition, that can affect the skin, lungs, heart, gastrointestinal tract, joints, and overall, the whole body. One medicine has been approved for its treatment, but only for lung fibrosis and nothing else.

Clinical practice guidelines recommend immunosuppressive therapies to lower the immune system, but no selective or personalised therapies are available. This means that the whole immune system is affected, exposing the body to many infections. The disease causes digital ulcers, very painful and often infected, that need to be treated with topic or systemic antibiotics. A swab should always be performed to use the right antibiotics.

Immunosuppressive therapies are still too generic, meaning that they inhibit the whole immune system, paving the way to several infections (mainly lung infections). This can be difficult to treat and can require hospitalisation. A careful evaluation of which antibiotics or specific treatments must be used, should always be performed, targeting the right bacteria, viruses, or fungi.

The last two and a half years have taught us many things regarding prevention that should become routine in our daily life. Prevention plays an extremely important role. Hand hygiene, the use of masks when meeting people with the flu, meeting people who are not perfectly healthy, and when going to the hospital for check-up visits or infusion therapies, should be a must for the so-called fragile patients and their families. The lower the risk of infections, the lower the need to use antibiotics.

Another important issue is the adherence to the prescribed therapy. In too many cases the antibiotic therapy is halted by the patient when symptoms and signs of the illness disappear. Prescribers and pharmacists should stress the importance of adhering to the therapy in order to get a full healing and prevent a relapse. On top of this, patients often spontaneously use the pills that remain in their stock, with a sort of self-prescription to cure “potential” infections diagnosed by themselves.

In my experience at national and European level I would encourage a programme on the correct use of antimicrobics in the wider community of connective tissue diseases. A few tips to prevent the spread of antimicrobial resistance:

These recommendations can help save lives including your life and the lives of those close to you.