RHD control program and register in NSW

Data analysed for this report were provided directly to AIHW from the New South Wales (NSW) Rheumatic Heart Disease (RHD) register. This register is funded by NSW Health. ARF, and RHD in persons under the age of 35 years became notifiable in NSW in October 2015, and the register was established in May 2016, and captures patients where the individual provides consent to be incorporated into the register. People older than 35 years and people previously diagnosed outside NSW may be included on the register if it is felt worthwhile by their health practitioner.

Due to the short duration of the NSW register’s existence, data on ARF and RHD diagnoses have been provided for 1 October 2015 to 31 December 2019. During this period the NSW register recorded 80 diagnoses of ARF and 57 diagnoses of RHD.

The data presented below are for the 4 full calendar years 2016–2019 only. Data for secondary prophylaxis were provided for 2017 to 2019. The data for NSW are not comparable to the data provided by Qld, WA, SA and the NT, in the previous sections. 


In 2016–2019, there were 71 reported ARF diagnoses in NSW. Of these, 28 (39%) ARF diagnoses were reported among Aboriginal and Torres Strait Islander people, 19 (27%) diagnoses were in Pacific Islander people and 8 (11%) diagnoses were in people from other high risk groups. There were more diagnoses in males than females, and in 0–14 year olds compared with other age groups. Around 1 in 6 episodes (17%) were reported as recurrent ARF.


There are 57 known residents of NSW living with RHD and on the register as at December 2019; 49 of these cases were diagnosed between 2016 and 2019. Of these newly diagnosed cases, 12 (24%) identified as Indigenous Australians, 16 (33%) identified as Pacific Islander people, and 4 (8.2%) were from other high risk groups. Just over half (26) of cases were in females and 3 in 5 (30) were aged 15–34 years.

Secondary prophylaxis in NSW

In NSW, secondary prophylaxis adherence has been calculated for all patients on the NSW register who were prescribed BPG during 2019. Adherence was calculated as a proportion of the scheduled 13 doses for patients on a 28-day BPG regime, and 17 doses for patients on a 21-day regime. Patients who commenced part-way through the year have been included with an adjusted expected number of doses. Patients who should have been on BPG but did not receive a dose in 2019 are also included in the data. 

There were 52 people in NSW prescribed secondary prophylaxis during 2019. Of these, 1 received 100% or more of their prescribed doses and a further 9 received 80–99% of their prescribed doses. Females were more likely than males to have received at least 80% of their doses (25% compared with 13%). Of all people prescribed secondary prophylaxis in 2019, 26 were Indigenous Australians.

The proportion of people receiving at least 80% of their scheduled doses increased from 8.3% in 2017 to 19% in 2018 and 2019.