The headlines are striking: AMR causes 700,000 deaths per year globally and the number could rise to 10 million by 2050^[1]. However, the burden is not evenly shared. Some patients ‒ including those with cystic fibrosis, cancer and sexually-transmitted infections ‒ are hit harder than others by drug-resistant bacteria and by the prospect of a world without effective antibiotics. 

Geography matters too. When it comes to AMR infections, people in central and eastern Europe (CEE) suffer more than those elsewhere in the region^[2]. For some resistant bacteria, the differences are large. Third-generation cephalosporin resistance in K. pneumoniae and carbapenem-resistant Acinetobacter spp. were reported in 50% of invasive isolates in several CEE countries, according to data published by the ECDC and WHO European Region.

This may sound technical, but it shows that AMR is already a reality for millions of people in Europe, highlighting the urgent need for improved antibiotic stewardship and incentives to develop new antibiotics.

The last novel class of antibiotics was discovered in 1984 and only 40 such products are currently in clinical trials. For its part, EFPIA has been working on solutions that would catalyse R&D and has proposed a Transferrable Exclusivity Extension (TEE) to fix a broken market.

The public and patients will play a key role in ensuring that existing antibiotics are used well, and in advocating for the development of novel products to limit the impact of AMR on individuals and health systems. We spoke to leading patient advocates in Poland, Hungary, Romania and the Czech Republic to explore how this issue is perceived and whether it is a priority for policymakers.

Key issues

• Public awareness of AMR and antibiotic stewardship is low
• Specialist patient groups are most concerned about AMR
• There is a lack of data on hospital infections in some countries
• Availability of existing antibiotics can be a challenge
• Patients have a role to play in engaging with decisions-makers on AMR action
• Some patients see the urgent need to incentivise R&D; others see a disconnect between national and EU-level policy discussion

Improving antibiotic access and AMR awareness

Radu Ganescu, CEO of the Romanian Association of Patients with Chronic Diseases, has first-hand experience of a healthcare-acquired infection. ‘I was infected in a hospital after having surgery,’ he recalls. ‘I needed broad-spectrum antibiotics which were not reimbursed, so I had to pay for them myself. Some antibiotic products are not available to all patients, presenting issues of equity and fairness.’

More broadly, Romania has faced shortages of certain antibiotics for a variety of reasons, including increased use of medicines in winter and delays in approving new medicines. ‘Health Technology Assessment for new medications has been improving, but up until a couple of years ago, it took 900 days from EMA approval before the public had access to new medicines,’ he notes.

The biggest issue, of course, is that too few new antibiotics are coming on stream. This, Radu suggests, may be a hot topic in Brussels policy circles but is less of a feature in national health conversations. Public attention has focused on antibiotic consumption and on hospital-acquired infections in particular. If there is to be action on R&D, it may be more appropriate to take a Europe-wide approach: ‘There could be incentives, delivered by the European Commission or the European Medicines Agency, to support companies to intensive research in this field.’

In the meantime, Radu sees a role for patients in discussing these issues with other stakeholders. ‘We need more roundtables with patients and specialists to focus on education and prevention,’ he says. ‘For chronic diseases patients, AMR is very serious as infection could endanger the lives of vulnerable individuals. We are well-placed to contribute to this conversation.’

Vulnerable groups at highest risk

Umbrella federations that represent the interests of a broad range of patients must balance a wide range of short- and long-term issues. For some of these, AMR can seem less pressing than day-to-day challenges of accessing services. However, specialist advocacy groups representing high-risk patients are at the coalface of multidrug resistance: their patients are highly vulnerable to infection and rely on effective antibiotics to survive.

Cystic fibrosis (CF) is a case in point. Life expectancy in this group is expanding, but the threat of AMR looms large. ‘Infections lead to lung function decline which is the main cause of mortality in people with CF, with hospital-acquired and multi-drug resistant infections a major problem,’ says Anna Skoczylas-Ligocka of the Polish Society for Fighting Cystic Fibrosis. ‘Patients are also afraid that they will be rejected from the lung transplantation list if infected with a multidrug resistant strain of some of the bacteria such as Burkholderia cepacia.’

Patient advocates are keen to play a central role in engaging with HTA bodies, the Ministry of Health and hospital managers to ensure patients have access to innovative treatments based on medical need now and in future. Anna says patients worry that they will have to wait for access to new products if national authorities are slow to reimburse innovative antibiotics.

Read more on how CF patient advocates are improving patients’ lives in Poland

Balancing competing priorities

In the wake of the pandemic, and with health systems under pressure, it can be challenging to keep AMR on the policy agenda ‒ despite the high cost of inaction.

Robert Hejzák, President of the National Association of Patient Organisations in the Czech Republic, says antibiotic resistance is sometimes viewed as an issue for sub-groups of patients rather than the wider patient community. His association, formed two years ago, now has more than 40 member organisations. It has engaged with European AMR initiatives, but AMR is not among the top priorities identified by members.

‘Patients with sexually-transmitted infections, notably gonorrhoea, are acutely aware of the risk of treatment-resistant infections,’ he notes. ‘We need new treatments for these patients. There is also a need for European guidelines on appropriate prophylactic antibiotic use in this area.’

The issue is not highly visible in policy debates, in media campaigns, or in public communication from health authorities, aside from a website supported by EU Health Programme funding, which has some essential information on this topic. ‘All stakeholders should have a seat at the table, including the veterinary sector,’ Robert says. ‘Patients certainly have a role: We need greater public awareness about AMR, including the issues arising from people ordering antibiotics online.’

He also points to the need for more data on the impact of resistance on quality of life and on mortality in the Czech republic. This was a recurring theme for patient advocates in several countries.

Petra Adamkova, Chair of Cancer Patients Voice, which represents Czech cancer patients, says public understanding of antibiotics and AMR is low despite some recent publicity. ‘Patients can be a very good communication channel for these messages,’ she says. ‘Many people don’t know the difference between bacteria and viruses, and some will ask for antibiotics even if they have the flu.’

Overall, Petra believes AMR is not viewed as the most pressing issue for Czech patients. While cancer patients may be at risk of infection when having surgery, or could see surgical operations disrupted due to infection, it is not their top concern: ‘In oncology, we have a lot of problems to solve; we are focused primarily on survivorship and improving after-care.’

Neonatal care: infection poses disability risk

It’s a different situation for neonatal care where infection control is a key issue. Whether it’s a hospital-acquired infection or a bug picked up by a pregnant woman in the community, newborn babies can require intensive neonatal care if infected. This increases demand for incubators and puts other vulnerable babies at risk of cross-infection.

Babies born prematurely are a vulnerable group who, if infected ‒ particularly with an untreatable strain of bacteria ‒ can face lifelong disability. Livia Nagy Bonnard, Founder and Vice President of the Hungarian Preterm Patient Association, says public awareness, investment in infrastructure and more information on infection rates is urgently needed.

Around 9-10% of all newborns are born too soon or in need of additional care, representing around 7,500 babies per year in Hungary. ‘Infection is everything in a neonatal unit,’ she says. ‘We have to take extreme care not to infect these vulnerable and fragile babies, putting them at risk of sepsis, blindness, pulmonary disease and even death. Parents must learn about hand-washing, disinfecting and how to behave around an incubator.’

Anecdotally, bacterial infection during pregnancy was very rare a generation ago, but ‘now it’s huge,’ says Livia. ‘We see an increase in pregnant mothers in need of antibiotics. The presumption is that if one antibiotic does not work, there’ll be another one that does. Awareness of AMR is still low.’

Improved isolation facilities and less overcrowding in neonatal care rooms remains a priority for Livia, who is a trained EUPATI Fellow and professional patient representative. However, due to difficulties accessing up to date national data on rates of infection and prevalence of AMR, patient advocates can find it difficult to highlight the issue with decision-makers and the public. ‘We do not have public data so cannot make comparisons between the current situation and previous years,’ Livia says. ‘Because we have no data, we don’t know what to advocate for.’

The Hungarian Preterm Patient Association is actively engaged with health professionals in reviewing new infection control guidelines for neonatal care, but hopes to see a more vigorous public debate on these issues. This will require much greater public awareness of AMR and antibiotic stewardship. ‘In France, there are information campaigns on TV and in doctors’ waiting rooms, but in Hungary we hear very little about it.’

The AMR crisis and the case for urgency

The experience of high-risk patient groups shows the kinds of impact AMR could have unless action is taken. However, even in countries where AMR is already a significant problem, public awareness is mixed.

Informed patients are keen to engage with decision-makers, but need more data on which to develop their position. In parallel, public awareness campaigns on AMR and antibiotic stewardship should be expanded. This can help to slow the pace of AMR, but a key element of addressing this challenge will be kickstarting the development of new antibiotics.

^[1] Sepsis Alliance, Global Perception of Antimicrobial Resistance (AMR), March 2021, p3.

^[2] ECD: Antimicrobial resistance surveillance in Europe 2023 - 2021 data (europa.eu)