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A St Vincent’s Hospital cardiologist is calling for greater awareness and screening of a disease that was considered a death sentence just five years ago.
Dr Nikki Bart says new therapies for amyloidosis – a severe disease that can cause heart failure – could be transformative for patients.
But a lack of awareness across the Australian medical community and the wider population is leaving an estimated 20,000 patients undiagnosed and many more not having streamlined access to the new life-saving treatments.
This month is Heart Health Month, a national campaign that aims to spread the word about heart disease and its risk factors, and encourage those around us to have their hearts checked.
Dr Bart, who has set up a new multidisciplinary clinic for amyloidosis at St Vincent’s Hospital, says: “Just five years ago this disease was fatal with a life expectancy of just four years. But we now have disease-modifying therapies which can prevent irreversible damage.
“The trouble is that many in the community are unaware of this disease and that we can now treat it. We need a paradigm shift to increase awareness, increase diagnosis, and streamline access to treatment across our medical community and the wider Australian population.
“This means educating the general population, medical students, GPs, and specialists.”
Amyloidosis occurs when abnormal protein deposits — amyloid fibrils — build up in tissue and organs including the heart, kidney, and nervous system. It can cause heart failure.
It was once considered extremely rare but, because of appropriate screening, it’s now becoming clear that it’s far more common.
Dr Bart, who also leads research into amyloid at the Victor Chang Cardiac Research Institute, says: “We estimate there are now more than 20,000 undiagnosed and untreated cases in Australia and around 13-17% of patients with ‘at risk’ conditions.
“The low diagnostic rate is due to low screening related to lack of clinical awareness and lack of access to specialist care.
“More than 50% of patients also see five different doctors before a diagnosis is made. There is a critical unmet need for earlier diagnosis before irreversible organ damage occurs.”
Until recently amyloidosis was considered a fatal condition because it was diagnosed late, and doctors had no treatments to offer patients.
But in the past few years non-invasive diagnosis has become possible, meaning patients can be diagnosed with blood tests and scans rather than a biopsy, and disease-modifying therapy is now available.
A new clinic at St Vincent’s Hospital in Sydney opened last year in collaboration with
the Victor Chang Cardiac Research Institute to meet this growing clinical need.
Treatments are now available at the clinic that can reduce symptoms, hospitalisations and improve mortality. Patients are also being enrolled in several different trials accessing therapies ranging from medications to injections to gene-modifying therapies.
The clinic also helps patients streamline their care which involves seeing multiple specialists to manage a range of different symptoms. The multidisciplinary service provides access to specialist cardiology, neurology, haematology, and genetic counselling.
The team of Dr Antonia Carroll, Dr Georgia McCaughan, Dr. Gorrie and Dr Bart have seen 30 new patients in the past 12 months which has resulted in 20 new diagnoses of amyloidosis and two early cardiac transplant referrals.
Dr Bart says: “This has been a huge step forward in the treatment of amyloidosis, but we are still not reaching everyone who needs our specialist help. We are working hard on addressing this by increasing education and awareness in urban as well as regional and rural areas.
“In addition, we know that patients from the country are at a disadvantage when it comes to medical care, so we are working hard on innovative ways to increase their access to our clinic.”
