New amyloidosis clinic
A new clinic for amyloidosis - a severe disease that can cause heart failure
30 November 2022
The Institute's Dr Nikki Bart is calling for greater awareness and screening of a disease that was considered a death sentence just five years ago.
Dr 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.
Dr Bart, who heads a new clinic for amyloidosis at St Vincent’s Hospital in Sydney 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 also 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.”
Dr Natasha Gorrie from Dr Bart's team presenting in Wagga
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.
Amyloidosis was once considered an extremely rare disease, but because of appropriate screening, it's now becoming clear it's far more common.
Dr Bart 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; including heart failure with preserved ejection fraction and degenerative aortic stenosis, have underlying amyloidosis.
“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, especially cardiac damage.”
Dr Nikki Bart and Dr Natasha Gorrie with a patient at St Vincent's Hospital, Sydney
Until recently amyloidosis was considered a fatal condition because it was diagnosed late, and doctors had no treatments to offer patients. It was a devastating diagnosis.
But in the past few years, the field of amyloidosis has exploded for two key reasons:
- Non-invasive diagnosis is now possible, meaning that patients can be diagnosed with blood tests and scans rather than a biopsy.
- Disease-modifying therapy is also now available. There has been a push to diagnose patients earlier and to increase awareness to provide these lifesaving treatments.
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.
Dr Nikki Bart and her team at their clinic in St Vincents Hospital, Sydney
Treatments are now available at the clinic which can reduce symptoms, hospitalisations and improve mortality. Patients are also being enrolled on 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 Natasha Gorrie and Dr Bart have seen 30 new patients in the last twelve 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.”
For more information on referrals please email amyloidreferrals@svha.org.au
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For all media enquiries and interview requests, please contact:
Julia Timms
Head, Media & Communications
j.timms@victorchang.edu.au
0457 517 355
Acknowledgement of Country
The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.
