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My daughter was one of thousands of Australians let down by inadequate UTI testing

As a health policy analyst and a woman who suffered for many years with a once poorly-recognised chronic disease – endometriosis – I am dismayed to have stumbled upon another public health crisis severely impacting women’s lives. Like endometriosis and the pelvic mesh scandal – to name just two women’s health conditions ignored for too long – this condition is misdiagnosed, mismanaged and under-researched.

Each year thousands of Australians – mostly women – are let down by testing for a common bacterial infection, leaving them undiagnosed and unable to access effective treatment for painful, life-altering symptoms.

In 2017, my daughter become one of them. Then 24 years old, she suddenly developed searing bladder pain and other urinary tract infection symptoms. Despite her symptoms and her distress, the tests her doctors used kept coming back negative and she was denied treatment for UTI. Instead, she was subjected to many months of invasive urological procedures and ineffective medications with unpleasant side-effects, questioned about the validity of her symptoms and, at one Melbourne emergency department, accused of being a drug seeker.

My daughter did in fact have a serious UTI. This was eventually diagnosed and treated successfully in the United Kingdom. Bacteria had become embedded in her bladder wall, causing severe chronic symptoms. The problem was the standard tests had been unable to detect her infection.

the time I was forced to send my daughter to London, I had met several other UTI sufferers. Together we founded a national patient advocacy organisation, Chronic UTI Australia Incorporated, and began gathering facts surrounding this growing public health crisis. Although there are no Australian statistics on chronic UTI, the 80% increase in the rate of UTI-related hospital admissions in Australia between 1998 and 2017 highlights the increasing health burden associated with under-detection and inadequate treatment of UTIs. This is consistent with data from the United Kingdom showing a rise in persistent UTIs.

UTI is the second most common human bacterial infection in the world. Half of all adult women will experience at least one UTI in their lifetime. After an initial UTI, 24% of women will go on to develop another within six months. Could the widely used tests for an infection that affects around 150 million people worldwide each year be missing genuine infections like my daughter’s? Alarmingly, the answer is yes.

Urinary dipsticks, used by GPs as a first line UTI diagnostic tool, are grossly insensitive and miss up to 70% of urinary infections. Midstream urinary cultures, considered the “gold standard” to identify bacteria, are shown through research to miss 50-80% of infections. The tests are especially unsuitable for detecting embedded UTIs, which have relatively few free-floating bacteria.

In his new book Cystitis Unmasked, Emeritus Professor James Malone-Lee explains that culture tests became the gold standard for diagnosing UTI in the 1950s, when it was believed urine was sterile. The discovery of the urinary microbiome – varied microbes residing in everyone’s urinary tract – led researchers to realise that urine cultures often provide misleading information and are incapable of distinguishing between people with or without UTI. Bizarrely, the “diagnostic threshold” for identifying UTI is based on a 1950s study of 74 pregnant women with pyelonephritis (a serious kidney infection). Somehow the method used in the study became adopted worldwide to diagnose UTI in non-pregnant people.

As well as ignoring evidence that discredits UTI tests, the medical profession is reluctant to accept the science showing chronic infection can, and does, manifest inside the human bladder. Instead, patients with urinary symptoms and negative cultures are too often sent off to find other possible causes for their symptoms, with the most common outcome being a diagnosis of exclusion – such as “painful bladder syndrome” – that merely describes the symptoms.

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Compounding the problems with UTI testing, doctors are increasingly under pressure to limit the use of antibiotics. While concern about antibiotic overuse is understandable, UTI specialists such as Professor Malone-Lee believe that inadequate treatment of ordinary acute UTI may be creating a scourge of chronic, embedded infections.

Chronic UTI Australia is in touch with hundreds of Australian women (and some men and parents) who, like my daughter, have had their lives derailed because of the gross deficiencies in UTI testing and treatment. My daughter is one of the luckier ones – many have suffered with intractable pain and dysfunction for years or decades.

In the same year my daughter developed a chronic UTI, 4.5 million Australians received a Medicare-funded urine culture test at a taxpayer cost of nearly $80m. When raising our concerns about these tests with the federal government, we were assured that “every health dollar contributes to improving Australia’s health care system, including the testing and treatment of UTIs”.

On the contrary, endorsing the use of a test that modern science continues to refute, and mistreating UTI sufferers based on inaccurate information, is a blatant misuse of taxpayers’ money.

We call on the medical profession and decision-making authorities to put an end to this scandal by abandoning current UTI tests, revising diagnostic and treatment guidelines to reflect the best available evidence, and backing research to find better treatments.

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