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The patient expert who lived with an antimicrobial resistant infection for 15 years before he knew about it (Guest Blog)

We’ve grown a bug in your most recent sputum sample and it’s a bit difficult to treat, and we might never be able to get rid of it,” said one of my doctors in 2004. 

I cannot begin to stress how little those words found their mark.

I know. I know. At the time of my diagnosis age 16, I was in denial of the reality of living with a life-limiting disease like Cystic Fibrosis (CF). Seduced by teenage vanity and conformity, and already taking time out of school for long inpatient stays, I persisted with a head-in-the-sand, fingers-in-the-ears attitude. The fact that I attended the appointment at all was a stroke of luck.

This brief exchange with my doctor typifies the problem with making people understand the position they find themselves in. The CF patient community deals with persistent and repeated respiratory infection, from childhood in most cases. As a result, outpatient clinics are organised so that patients with the same antimicrobial resistant (AMR) infections attend on the same days and limit cross-infection.

In that sense, an AMR diagnosis is not that out of the ordinary.  Antibiotic-resistant bacteria killed nearly 1.3 million people worldwide in 2019[1]; by 2050, this figure could soar to 10 million deaths per year[2]. What is out of the ordinary though is the use of the term ‘Antimicrobial Resistance’ in doctor/patient settings. If I hadn’t been working as a patient engagement consultant and connecting with other CF patients, I might have never heard of AMR or connected it to my own life. Therefore, one can imagine that the healthy population consuming most antibiotics is unaware of the true price of these treatments.

After the meeting with my doctor in 2004, I asked myself: how do you, a doctor, deliver bad news to make a child already beginning to suffer with the emotional burden of CF, understand that this is serious without scaring them senseless and pushing them further away from engaging with their disease?

Almost 19 years later from that side-room conversation, I’m asking myself: what can we do so other people – young and old, otherwise healthy or adjusting to new life circumstances – either don’t receive an AMR diagnosis or have the treatment options to one?

Because the reality they would be facing is much more terrifying. The last class of novel antibiotics was discovered in 1984. I wasn’t even born then. It takes on average 10-15 years and 1.3 billion to develop a new antibiotic[3], with fewer than 1 in 70[4] succeeding following early screening. Once out, they must be used only when they are needed, when nothing else works and for a short period of time, otherwise they become less effective. Antibiotics are also modestly priced, which, taken together with their short-time and last-resort use, means there is no market for these medicines. And no ‘market’ for the scientists working to develop novel classes of antibiotics, and who are migrating to other areas of science.

The development of new antimicrobials is critical for patients with cystic fibrosis and other infectious diseases. Without continued investment in research and development, we risk losing the ability to treat even common infections, leading to devastating consequences. We must prioritize the development of new antimicrobials to ensure that we can continue to fight against infections and improve the lives of patients like me.

 

[1] https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02724-0/fulltext

[2] https://www.who.int/news/item/29-04-2019-new-report-calls-for-urgent-action-to-avert-antimicrobial-resistance-crisis

[3] https://jamanetwork.com/journals/jama/article-abstract/2762311

[4] https://carb-x.org/

Thomas Smith

EUPATI Fellow, European Health Parliament member, Non Executive Director, Independent Chairman and Life Sciences...
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