AMR case study: cystic fibrosis patients live in fear of infection

An interview with Anna Skoczylas-Ligocka, Project Manager, Polish Society for Cystic Fibrosis

Cystic fibrosis (CF) is an inherited disease affecting the lungs and other organs. While outcomes have gradually improved thanks to innovative treatments, life expectancy is still far below the general population. CF patients are at risk of hospitalisation and death from bacterial lung infections. 

Antibiotics are used to treat these bacterial infections, but there is a problem: some of the bugs that cause lung infections, such as pseudomonas and staphylococcus, have become resistant to antibiotics. As concern grows about the future consequences of antimicrobial resistance (AMR), people with CF face these threats on a daily basis, highlighting the urgent need for new treatment options. Creating strong incentives for the development of new antibiotics is crucial in addressing the challenges posed by AMR and providing effective solutions for CF patients.

‘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.’ 

Building on progress

The Polish Society for Fighting Cystic Fibrosis represents 1,700 CF patients. It was founded by parents and doctors in 1987 at a time when access to medicines and scientific knowledge was low, and the death rate was significantly higher than it is today. ‘That was a very different time,’ Anna explains. ‘Mortality was very high and the median age of death was below two years of age.’ 

Poland has come a long way in the meantime. The median age of death for people in Poland with CF is above 25 years, but this is still below the European average. ‘Adults now account for more than half of our patients. Thanks to innovative medicines, we can expect lifespans to improve further,’ she says.

However, access to the full suite of approved antibiotics is a challenge and, due to antimicrobial resistance, there is a growing unmet need for new treatments. ‘CF patients often need high doses of two or three antibiotics,’ explains Anna. ‘Depending on the bacteria, they may need access to a wide range of inhaled, intravenous or oral medication.’ 

The problem is that decision-makers do not always take account of the unique needs of this small patient group. ‘When a new drug is approved, there can be a misconception that other treatments will not be needed. In fact, a patient may still need several antibiotics depending on the bug they are fighting.’

Improving infection control capacity

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 Poland is slow to reimburse innovative antibiotics. ‘There are new medicines in the pipeline for CF which doctors understand are badly needed to reduce infections and improve transplant outcomes,’ she adds. 

Patient groups have also played a constructive and proactive part in ensuring that the highest standards are in place to avoid cross-infection in hospitals. Central to this effort is upgrading hospitals to allow CF patients to be cared for in separate rooms with their own toilet facilities. 

‘We conducted an audit several years ago and found that none of the centres treating CF patients met this standard,’ Anna says. ‘Our society has invested a lot of money over the past decade to renovate hospitals and build separate rooms.’

Patients moving centre stage

While the prognosis for people in Poland with CF has improved significantly since the Polish Society for Fighting CF was established, there are many challenges ahead. Chief among these is the AMR challenge and the need for new antibiotics to help overcome resistance. Patient advocates are determined to ensure their voice is heard as they look to a better future.