Patient organisations have a role to play in fighting antibiotic resistance

Antimicrobial resistance (AMR) is not a new problem. Bacteria are very simple organisms that multiply and change (mutate) very rapidly in response to medicines.

Ever since antibiotics were invented, the “race” has been on between bacteria and science, with bacteria becoming resistant to existing medicines, and science trying to come up with new medicines. (For an overview of AMR click here).

Resistance has now become a particularly urgent public health priority. Rates of resistance are increasing alarmingly because antibiotics are being overused and misused – used for the wrong purposes and in the wrong ways – which is worsening the problem. Meanwhile, virtually no new antibiotics are being developed.

A new study by the ECDC estimates that each year 33,000 people in Europe die from infections caused by resistant bacteria, and the health burden of resistance is similar to the combined burden of HIV, influenza and tuberculosis. Antibiotics reserved for treating the most resistant bacteria – referred to as “last line” – are now becoming ineffective; infections such as pneumonia, tuberculosis, gonorrhoea and salmonellosis are becoming harder to treat because of resistance. A study from the OECD estimates the costs of AMR could be up to $3.5 billion a year across OECD countries.

Patients are vulnerable to resistant bacteria

Patients with chronic conditions are particularly vulnerable to healthcare-associated infections and resistant bacteria. Patients necessarily spend more time, more often, in healthcare environments. Many routine healthcare procedures, such as operations, may require antibiotics to prevent or deal with infections.

Resistance poses a grave risk for patients who need surgical interventions or other procedures that may become impossible if there are no effective antibiotics (in a worst-case scenario) to treat infections. Already, patients with multi-drug-resistant bacteria have limited treatment options. For patient stories about AMR, visit the EAAD website.

New antibiotics are sorely needed. But, given the lack of new antibiotics being developed, and the fact that resistance will inevitably develop, it is critical to tackle the problem from multiple directions: reducing use, appropriate use, and better infection control measures.

In addition, better diagnostics are needed. It is not always possible to know whether an infection is caused by a bacteria or a virus. The development of quick and affordable diagnostics that can tell whether an infection is bacterial in the first place, and what kind of bacteria are causing it (thus identifying the right antibiotic for treating it) is an important priority.

Patient organisations can help in promoting prudent use of antibiotics

Patient organisations and individual patients play an important role in helping fight antimicrobial resistance. Many people don’t know that antibiotics are only effective against bacterial infections and do not cure infections caused by viruses, such as the common cold or flu. Many people don’t know that when using antibiotics, it is important to take them exactly as prescribed, and not to self-medicate with antibiotics. Patient organisations can help raise awareness of the issue and help improve people’s health literacy on this topic.

Patient organisations can get involved in improving patient safety

Most of the disease burden (75%) is due to healthcare-associated infections, which mostly occur in hospitals or other healthcare settings. Preventing infections is therefore of vital importance. Patient organisations and patients are also important partners in improving patient safety, for example by getting involved in hand hygiene campaigns in hospitals.

Access to information

Having reliable, relevant and understandable information on patient safety is a cornerstone of patient empowerment. Currently, patients are not informed about rates of resistant bacteria or healthcare-associated infections in hospitals, and what steps are being taken to address these. 

Transparent information is a requirement under the 2009 Council recommendation on patient safety, and also the 2001 EU Directive on cross-border healthcare; but too often, information is either not available, or if it is, it is too difficult for lay persons to understand. Patient organisations can ask for better, more understandable information for patients on this issue.

EPF’s commitment

AMR is very complex, and no one organisation can tackle all aspects. This is why we need to work together and all of us should do what we can.  AMR is particularly concerning to EPF , because resistance directly affects patients and their families.

EPF is committed to fighting antimicrobial resistance, by engaging the patient community across the EU. We participate in the annual European Antibiotic Awareness Day and share information with our members. This year we contributed a statement and spoke at the European Commission event held on 15 November, and will continue to work together with EU and international institutions and agencies on this issue. We are part of the stakeholder forum of the EU joint action on antimicrobial resistance, EU-JAMRAI, which met for the first time on 9 November, and will inform our membership regularly with news and useful resources. We also support the thematic network on AMR on the European Health Policy Platform.

“One health”

Patients are also citizens. As voters, we can hold our politicians to account. Overusing antibiotics in farming and the presence of antibiotics in the environment also contribute to an increased resistance. The EU has banned the use of antibiotics as growth stimulators in farm animals (source) but more can be done to reduce any unnecessary use and ensure that as little as possible gets into the environment. 

The EU has adopted a One Health Action Plan on AMR. Now there needs to be effective implementation of the plan. Concrete targets and measures need to be put in place for Member States to take actions, and to check regularly if those actions are indeed effective.

Further information

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