By Shobha Shukla and Bobby Ramakant*
Despite dealing with drug-resistant infections herself since birth and being fully aware of the looming danger of running out of options to treat the infections, it is indeed inspiring to see Gabriella Balasa (also known as Ella) devotedly raising awareness and doing all she can to stop misuse and overuse of medicines and help save lives.
Gabriella was born with a rare genetic disorder called cystic fibrosis. It causes the body to produce thick and sticky mucus that builds up in organs including the lungs and pancreas, clogging the airways and making it difficult to breathe. It is also a perfect breeding ground for bacteria, So people with cystic fibrosis, like Gabriella, live with a lifelong heightened risk of infections. Worldwide, an estimated 162,428 people are living with this disease.
The disease makes Gabriella prone to recurrent lung infections. That is why she requires medicines to treat these infections on an ongoing basis. She knows that one day, antibiotics might not be enough to stop them – and that Antimicrobial Resistance (AMR) could become life threatening for her.
Misuse and overuse of medicines (that are used to treat infections) make the disease-causing microbes resistant to them over a period of time, and the medicines (or antimicrobials as they are called) stop working. This is referred to as Antimicrobial Resistance (AMR), due to which infections could become harder, or even impossible to treat. AMR presents a rising global threat to human, animal, plant health, and our environment, as well as food security, and the achievement of the Sustainable Development Goals.
Living with cystic fibrosis
Cystic fibrosis causes cysts and scarring (fibrosis) in the pancreas. This damage, plus the thick mucus, can block ducts that release digestive enzymes, making it hard to get nutrients from the digestive tract.
Gabriella, who is also a member of the World Health Organization (WHO) Task Force of AMR Survivors, shared her personal experience of dealing with cystic fibrosis and AMR, while addressing the world leaders at the 79th United Nations General Assembly High-Level Meeting on AMR in September this year.
“This disease [cystic fibrosis] makes me highly susceptible to infections, and I am running out of antibiotics to treat them. Overtime, the bacteria that have harboured in my lungs have become resistant to medicines. I have experienced countless episodes of drug-resistant infections,” told Gabriella to CNS (Citizen News Service) founder Shobha Shukla while speaking in AMR Dialogues on the sidelines of UNHLM on AMR.
She has spent weeks in hospitals throughout her life, getting antibiotics for these infections which are becoming increasingly difficult to treat.
“It has been a terrifying experience. I have to take treatment for these infections even if they are drug-resistant, knowing well that I am helpless against these tiny little microbes that are invading my body. Because of this, I share my story and advocate to bring together stakeholders to help prevent AMR”, said Gabriella.
Although she was born with the disease that made her prone to cycles of lung infections since a very early age, Gabriella got better understanding of the science behind AMR when she began working in a microbiology laboratory. She looked at AMR in the environment, river waters, and other environmental samples. “These experiences and the merging of my work in the microbiology laboratory with my personal lived experience of dealing with AMR, is what spurred me to rise up and share my experience -and call for change.”
In 2019 she was dealing with an acute infection which was not getting better even with ‘last resort’ medicines. Then she resorted to an experimental treatment with bacteriophages, which are viruses that attack bacteria. Although experimental, the bacteriophage therapy helped her with treatment at that time.
We need new person-centred therapies and solutions
Gabriella best understands the fear, desperation and devastation of people who have infections that have stopped responding to medicines. The need to have new therapies and person-centred solutions is acute. But equally important is to stop the misuse and overuse of medicines we have today, says Gabriella. Use medicines responsibly in all sectors – human health, plant health, food and agriculture. Also, we have to save the environment so that AMR is not spreading by the way we are living.
Hope on the horizon
Thanks to the medical advancements, severity of cystic fibrosis has reduced for her in recent years. The phage therapy she has been using since 2019 “treats the cause of the disease which reduces the amount of mucous which is being built up in the lungs – therefore less of an environment for the bacteria to thrive,” she shared with CNS.
For 4 years now, she has not been on intravenous antibiotics whereas earlier she had to be on them every 2-3 months. Her quality of life is much better now, though she has to take oral antibiotics and inhaler medicines to treat her lung infections.
David T Elin, Senior Director Advocacy and Government Affairs, at US based Cystic Fibrosis Foundation, emphasises that patient voices and stories are very important in our efforts to prevent AMR. “AMR and its impacts on the community are just numbers on a page until we explain the real-world impact.” He was speaking in a webinar ‘Widening the engagement of patient advocacy groups and networks in AMR action” organised by WHO during the World AMR Awareness Week (WAAW) this year.
Bacteria ahead of the medicines we currently have
“Bacteria are ahead of the medicines that we currently have. We need to invest in R&D to bring new and better products to market. We know that policymakers are a key player in this in this puzzle. One of the things that we have been emphasizing is to raise awareness for our government here in the United States to pass policies that will help bring new drugs to the market and get the treatments in the hands of patients who need them most. We are currently lobbying for the passage of the PASTEUR (The Pioneering Antimicrobial Subscriptions To End Upsurging Resistance) Act, that aims to stimulate the antimicrobial pipeline (by establishing a subscription programme for antibiotic and antifungal developers) that will not only have an impact here in the United States, but globally as well,” said Elin.
Gabiella rightly calls upon the world leaders to leverage the power they have to translate global goals into local actions “because lives are at stake.” And as Elin says, we need to link arms, and partner with other stakeholders including patient groups to come together to share our stories and our voices with our lawmakers to bring about effective policy changes.
There is no excuse for inaction. AMR can happen to anyone – we all are at risk if we get infected with drug-resistant microbes. We need to diagnose infections accurately and quickly enough and treat them with effective medicines in a person-centred manner. Stopping the spread of infections should be a top priority too.
*Shobha Shukla and Bobby Ramakant co-lead the editorial at CNS (Citizen News Service) and both serve on the boards of international award-winning Global Antimicrobial Resistance Media Alliance (GAMA) and Asia Pacific Media Alliance for Health and Development (APCAT Media). Follow them on Twitter/X: @shobha1shukla, @bobbyramakant)
