What is living with chronic, untreatable ‘superbugs’ like?

Antimicrobial Resistance (AMR) occurs when microbes (including bacteria, viruses, fungi, and parasites) mutate over time and no longer respond to the drugs (antibiotics, antivirals or antifungals) that were used to treat infections. In 2019, AMR has become the leading cause of mortality globally with 4.95 million deaths associated with bacterial AMR. A UK government report forecasts that AMR could claim ten million lives every year by 2050 across the world.

In Australia, in 2015 there were more than 30 million antibiotic prescriptions through the Pharmaceutical Benefits Scheme, making it the eighth highest user of antibiotics compared with 28 European countries. In 2019, more than 10 million people in Australia (or 40.3% of the total population) had at least one antimicrobial dispensed under the Pharmaceutical Benefits Scheme (PBS) or the Repatriation Pharmaceutical Benefits Scheme (RPBS). This is much higher than most European countries and Canada. An OECD report released in 2018 projected that 10,430 people in Australia will die between 2015 and 2050 as a result of AMR.

However, little is understood about the experiences of people who struggle with chronic, untreatable AMR conditions. Our research explores the social burden of AMR on patients and their caregivers. We interviewed 9 patients and 6 caregivers in Australia, New Zealand, and overseas over 2021 and 2022 to inquire about their experience of AMR infection, the context of their diagnosis, medical travel to obtain various forms of treatment, and social care, as well as their access to AMR-related information and communication with healthcare providers. The informants included 7 men and 8 women aged 24 to 75.

“It is so exhausting” – The burden of managing treatment

For many informants, the experience with AMR infections was one of repeated and aggressive treatment regimes. The usual experience for informants was a cascade of interventions. For example, John[i] (59 years old) described his prolonged ankle infection:

"I had a few more – all up, I had 18 procedures on the ankle to remove. (…). Washing out and then cutting – and cutting bone out, bits of infected bone. So through all that, I ended up coming out – they had to do a skin graft because they had gone in so often, they destroyed the integrity of the incision."

Another interviewee is Dan who suffers from bronchiectasis, a chronic lung condition following a resistant Pseudomonas aeruginosa infection. Dan was initially treated with tetracycline but by the time of our interview, requires prolonged treatment with “the strongest oral and IV antibiotics” and “a lot of hospitalisations” having had three of four “lung clean-ups” and major operations. He finds he has become socially isolated for fear of catching transmissible infections now and feels upset by the way people look at him, especially during the COVID period, as the infection makes him cough and spit and other people feel disgusted.

In the stories of our informants, AMR infections often emerge at times of other health crises, adding to their distress. Some informants described their infections as iatrogenic, a result of infections contracted while in hospital for other treatment. These may have followed a previous medical procedure or surgery. It might have started as an infection that they expected would be self-limiting but then progressed into a never-ending series of crises. In 69-year-old Lucy’s case, she had gone through a large operation to remove the tumour for a benign cancer near her mastoid muscle. After the surgical procedure, the area behind her ear started oozing and Lucy later found out she had MRSA (Methicillin-resistant Staphylococcus aureus). Ever since, she had been put on a series of strong antibiotic treatments, both orally and intravenously, which badly affected her quality of life:

"They make me feel nauseous, lightheaded, tired and I have a bad stomach as I have to have them on an empty stomach and I don’t see why I should continue them if the infection is still there, and that’s the only thing that they respond to. I don’t know what to do to be honest with you."

These infections limited people’s ability to continue their work, caused social isolation and distress. Peter (71 years old) who suffers from chronic bacterial prostatitis (CBP) as a result of a resistant E. coli infection described his situation: “I was depressed, sleeping an hour a night, I certainly collapsed. I spent 16 months in bed, sleeping 20 hours a day… The whole thing was destroyed by this…From that time since, assets were gone, not able to work, and depressed… It just got a lot worse.”

Young participants interviewed in our research also spoke of long and traumatic repeated illnesses as a result of their AMR infections. In the case of Tina, a 24-year old young woman in NSW, the chronic Urine Tract Infection (UTI) interferes with her ability to undertake normal daily tasks.

"So my alarm went off, and I just had really bad pressure and burning. So I went to the toilet and the burning feeling just rushed straight to me. And it was really painful. (…). But usually yeah I get bladder spasms at night. And then I get painful urination, and just a burning feeling usually half a morning every day. So physically I just feel constantly, it is so exhausting.”

Emotional and physical toll on caregivers

Not only patients but their families also suffered the debilitating effects of AMR and encountered major disruptions to their everyday work and life when caring for their loved ones. The need to attend frequent and multiple specialist appointments, hospitalisations and provide emotional support while maintaining jobs and family routines caused caregivers to feel psychological distress and physical and mental exhaustion. Joanne Matthews [her real name by request] had to step down from her public service role when her first daughter constantly suffered severe reflux since birth as a result of a resistant streptococcus and needed to be tube-fed for years:

"Her infancy was just horrendous. We didn’t sleep. So my husband and I used to sleep in 4 hour shifts. She had to be held upright so that she wouldn’t aspirate, because she otherwise would turn blue."

The burdens on caregivers can be exacerbated by other issues such as geographical distance to travel for medical care, age, and family responsibilities. For example, Carol (56 years-old) is the only child and caregiver of her 86-year-old mother with a resistant UTI. She drives her mother who lives in rural New South Wales to monthly medical appointments in Canberra – the daughter’s residential city:

"[I]t gets very stressful, I have a very busy job and, and a big job. And so, it means many catch ups, though look, my work is very flexible and they have never ever had an issue with me going. You do what you’ve got to do, that’s not a problem but it means I do have a lot of catch up. So that, that could mean logging on at night or the next day is a 12-hour day or whatever so. (…). It affects me, it has become draining because and more because I want her to be well. I don’t like to see her suffer which makes me angry."

Meanwhile for Ben and his wife Trudie who suffers from bronchiectasis, who relocated to Australia from Europe five years ago, they are concerned that her condition will affect their desire to apply for permanent residency and they are unable to travel because of her condition. They may have to return to their home country:

"We’re pretty privileged and pretty lucky that, even if she needed the treatment, we could pay for the treatment. I think, for other people in our situation, they probably would have had to have left the country by now…  because when she had to go back on her medication, because we’re not covered by Medicare, it’s not US numbers but it’s still $4,000 Australian dollars a month."

Using alternative therapies

Throughout our research we spoke to many people who were using alternate or complementary, and/or dietary therapies alongside their allopathic medicines to assist in healing, strengthening the immune system, and to deal with the side effects of antibiotics. For example, many participants reported to drink ginger tea and take medical cannabis oil, hemp seed oil, vitamin B6, or homeopathy remedies. Natural therapies were sought in several cases. Joanne Matthews recalled the treatment journey of her daughter who had been infected a streptococcus. The infection caused severe gastrointestinal reflux disease and required major stomach surgery and long-term antibiotics. Following consultations with many GPs and medical specialists, she consulted an integrative medicine practitioner for her daughter:

"She is part of the Australian Integrative Medical Association. (…). They’re a fully trained GP.  But they’re also trained – things like traditional Chinese medicine. Some of them have ayurvedic medicine, she had traditional Chinese medicine, and western herbalism."

Several of the informants we interviewed had travelled overseas seeking other non-orthodox treatments for their infections at a clinic in Eastern Europe where viral bacteriophages (a type of harmless viruses) are used to treat antibiotic-resistant infections. Their experiences with phage therapy has resulted in varying degrees of success.

For Sandra who was diagnosed with resistant Pseudomonas aeruginosa and Enterobacter Cloacae infections which caused her to suffer with copious malodourous nasal discharge for the last fifteen years, she found her nasal discharge has decreased and infection has largely cleared after receiving the phage therapy from the clinic in Georgia. Meanwhile for Peter who said having spent approximately AU$100,000 in his two trips from New Zealand to Georgia, the treatment was helpful at clearing the E. coli infection. But his prostate was reinfected after his treatment and he believed it was due to a procedure when the clinic inserted a catheter to take a sample for testing.

Like Sandra, Victoria-based Albert who had been diagnosed with a Methicillin-resistant Staphylococcus infection in his prostate told us in our interview that he had felt “felt 100% better” after returning from Georgia. However, the home administration of phage caused him a lot of distress. He brought back phage that required daily injection. Even with the help of his partner who is a nurse, they could not do it properly, particularly regarding the measurement of the injected amount. Around 4 weeks later the infection came back:

"I couldn’t handle the needles in the urethra, the syringes. (…). I could buy the syringes and I can try to do it. My partner is a nurse, but it was just too stressful, especially when we got the volumes wrong."

More than once Albert attempted to consult some medical specialists in Melbourne after encountering challenges in self-monitoring phage. However, he was turned away:

He [the doctor] says, that was your business going over there, all I can suggest is other antibiotics, that was it.  And I went and saw the infectious disease expert. He says, oh you need to have the operation. So, I haven’t seen them in two years.”

As phage therapy has not been approved by Therapeutic Goods Administration (TGA) and only few hospitals in Australia have begun to offer this therapy on compassionate grounds, undertaking and monitoring phage therapy in Australia for patients like Albert will continue to be a private struggle with little or no support from the health sector here. As Albert said: “[It is] too hard, too painful for me.”