Marie Denis knew there were risks associated with the non-sterile needles she was using at the time, but she didn’t know one of those was infective endocarditis. In fact, she didn’t know what infective endocarditis (IE) was back then. Marie had been to detox programs, rehab and needle and syringe program (NSP) sites but IE never came up as a topic of discussion. That is, not until she received her own IE diagnosis in hospital.
Marie, a harm reduction worker with Queensland Injectors Health Network (QuIHN), said her symptoms were shortness of breath, tiredness and heart abnormalities. She said she experienced stigma and discrimination in hospital but there wasn’t so much as a whisper about IE.
“They weren’t really conversing with me a lot until I said to them that I was prepared to go on a methadone maintenance program… but they still didn’t speak to me about the endocarditis,” Marie said.
Infective endocarditis is an infection and inflammation of the inner lining of the heart chamber and valves that generally originates from bacteria, fungi or other germs entering the bloodstream and colonising in the heart. “Strep” or “strap” bacteria, which normally populate body surfaces, are commonly the infecting organisms that enter the bloodstream via broken skin. Often with cases of IE in people who inject drugs, infecting organisms usually get access via a needle entering the skin. Common symptoms include shortness of breath, high fever, heart murmurs and fatigue.
‘No Fever, No Murmur, No Problem? A Concealed Case of Infective Endocarditis’, a paper published in the Journal of Emergency Medicine in March 2019, highlights that IE is a disease that requires timely intervention and diagnosis.
Dr Michael McCann, a medical registrar at the Fiona Stanley Hospital in Perth who co-authored the paper, said the types of patients who contract endocarditis are changing and the resistance patterns of the bacteria have altered.
Today, people who inject drugs have a much higher rate of staphylococcus aureus (“golden staph”) endocarditis, which is a highly virulent and aggressive infection.
Michael said diagnosing an infection on day one might be enough to confine it to the heart valve but diagnosing it on day seven might mean multiple sites of infection and a much worse patient outcome.
“As in, they have endocarditis with brain abscesses, kidney infection, liver abscess, spinal abscess and they’re very, very sick,” said Michael. “In our institution, we’ve certainly recently had cases where a patient was identified with a staph aureus infection, probably had endocarditis, but then decided to leave the hospital against advice… and then the patient comes back to the hospital a week later, sicker, and then the patient dies, despite every treatment we could provide.”
IE can be catastrophic for people who inject drugs and their communities but it’s hard on the health budget too.
Journal paper ‘Evaluation of Healthcare Expenditure for Infective Endocarditis: Comparison Between Public and Private Health Systems’, published in Heart, Lung and Circulation in 2016, reviewed costing data from Melbourne’s St Vincent’s Public and Private Hospitals between 2000-2015 and found that the mean cost for treating IE patients in the private hospital system was $21,254 and $51,456 in the public hospital system.
Michael said a general hospital bed in Western Australia incurs a cost of about $1500 per day. Going into intensive care is more like $8,000-$10,000 per day. He emphasises people with IE might also live the rest of their lives with disabilities – because of a massive stroke, for example – that can potentially incur substantially more cost in terms of disability support expenses and loss of income.
Michael’s 2019 paper includes a case report involving a 33-year-old woman who spent 60 days in hospital with IE. Before discharge, the patient experienced a range of serious problems including septic arthritis of the wrists and ankles, brain abscesses, aneurysms and septic shock.
Diagnosis and intervention for this patient was complicated because she didn’t exhibit common symptoms associated with IE — including shortness of breath, fever and murmurs — and her history of intermittently injecting drugs wasn’t promptly clarified (knowing a patient’s drug history is key to IE diagnosis).
Michael said it can be tricky for medical staff to talk to hospital patients about drug use in the emergency setting. Often, in a busy emergency department, there are people everywhere. Privacy is a thin curtain between hospital beds. It’s noisy. There are lots of invasive tests and needles.
Patients might also be preoccupied with concurrent social, familial, financial and relational issues. They might also be experiencing mental health issues.
“Then you ask someone, ‘Have you been using drugs recently?’ Some people don’t feel comfortable disclosing that, which is understandable,” said Michael.
Australia’s needle and syringe programs focus heavily on prevention education. To reduce the incidence of hospitalisation from injecting-related IE in the first place, NSP workers have a key role to play.
Damon Brogan, a Community Health Worker for cohealth and Health Works Manager, said when injecting drug users at NSPs take swabs (or don’t take them) it’s a good opportunity for NSP workers to talk to them about safer injecting practices.
“It’s encouraging people to have plenty of sterile syringes but also swabs,” said Damon. “Always emphasise the importance of swabs.”
“Clean the spoon, clean your fingers and clean the injecting site. If everybody did that on every occasion, the message would probably be a bit stronger, but you don’t want to harass people. You see people every day coming to your NSP. You don’t want to give them a lecture but always offer them swabs.
“Those are really important conversations that anyone can have in a few minutes. If people ask why, you can go into more depth.”
Damon also added it’s important to raise awareness that injecting-related disease prevention is about more than HIV and hepatitis prevention.
“Hepatitis and HIV education is going pretty well,” he said. “Not everybody is injecting as safely as they could, but most people are pretty well aware about not sharing syringes with other people.
“People are far less aware of a range of common infections you can get from bacteria and fungi.”
Marie said the hospital where she was treated for IE could have capitalised on an opportunity to share educational information with her about the issue of IE for people who inject drugs.
“That would have been the perfect time to have an intervention around how I got it, how I could have prevented it, what it does and what I have,” she said. “If I had had that information, then I could have passed it on to people I used with.”
Damon’s safer injecting tips for NSP workers to share with people who inject drugs:
- It’s not just about not sharing syringes. Make sure everything is clean.
- Sticking a syringe in your mouth and licking it before injecting is highly dangerous.
- Take as many swabs as you need.
- Ensure your skin is as aseptic as possible.
– Joshua Jennings