Remote community representatives and members of community organisations, such as the Snow Foundation and Deadly Heart Trek, attended Parliament House on Wednesday, meeting with Senator Malarndirri McCarthy to raise awareness of Rheumatic Heart Disease (RHD) and the impact this preventable disease is having on First Nations people.

RHD is a disease that experts say should no longer exist and is a completely preventable condition, yet cases are beginning to rise in Australia.

Statistically, two young Aboriginal and Torres Strait Islander people die each week from RHD.

RHD is initially caused by a Streptococcus pyogenes (also known as Strep A), which can present as a sore throat or skin infection.

On a national scale for Indigenous and non-indigenous populations, Strep A is very common, with one in 10 school-age children having the bacteria in their throats at any one time.

As a consequence of this, RHD is a disease where young people aged 5 – 14-years are at greater risk.

Strep A can pass easily from person to person, just like upper respiratory tract infections.

Like many national health burdens, First Nations communities are also overrepresented with incidences of RHD, as the disease tends to spread easily in areas of overcrowded housing, or where access to food quality is poor.

Inadequate hygiene infrastructure also plays a role.

"RHD is a serious health justice issue causing devastation across Aboriginal and Torres Strait Islander communities, said Vicki Wade, a Senior Noongar woman from The Heart Foundation.

"It's destroying lives through ongoing and painful injections, surgeries for children as young as five, unnecessary deaths and the huge impact all this is having on our communities."

It has been estimated there are around 10,000 people living with RHD or its precursor, acute rheumatic fever (ARF), with more than 80% being Aboriginal and Torres Strait Islander people.

Experts advise without urgent action, this number is expected to almost double within the next decade, resulting in over 650 deaths and over 1300 individuals requiring open-heart surgery.

Aboriginal and Torres Strait Islander communities, particularly in remote Northern Australia are significantly impacted by RHD.

A number of significant social and economic circumstances lead to the exposure and spread of Strep A, including limited access to adequate healthy housing, over-crowding, limited access to safe and hygienic spaces and regular washing facilities, and other systemic issues including poverty, low-quality food, and a limited knowledge of Strep A and its causes.

Mr Alec Doomadgee a Waanyi, Garawa and Gangalidda man from the lower Golf of Carpentaria has a very personal and sad experience with RHD.

He told National Indigenous Times a tragic story of losing two sisters, a daughter and a niece to the disease.

"It's the highest killer of Aboriginal people especially Aboriginal women in my hometown of Doomadgee," Mr Doomadgee said.

Mr Alec Doomadgee at Parliament House speaking about the affects of RHD on Wednesday. (Video: Jess Whaler/National Indigenous Times)

Mr Doomadgee firmly believes a lack of government attention to RHD and systemic racism is to blame for his family member's deaths.

"It's time for action, we've had enough talk. We need to start to look for real practical solutions to dealing with RHD," he said.

"Practical solutions that will make a real difference on the ground, in our homes, they must be healthy and maintained.

"We must find ways to improve our living conditions, and ways for people in our community to purchase the things they need on a weekly basis that will make a difference.

"White goods, quality food and cleaning products, access to a laundromat, those sorts of things, and a way to overcome the prohibitive costs that we face, simply because we are living remotely."

Ms Kara Rudken, a Taribelang, Bunda and Wiradjuri woman has a son impacted by the disease.

"Coen was seven when he was diagnosed. It could have been avoided if Coen had just been screened properly," Ms Rudken told National Indigenous Times.

Ms Rudken said when her son was presenting with illness, she had taken her son to hospital on several occasions and been sent home.

It wasn't until he was unable to walk he was then admitted to emergency and a series of traumatic events ensued.

Whilst RSD is continuing to have a devastating impact on communities, there are a large number of organisations and individuals who are committed to working to end RHD.

They include the people who presented at Parliament House on Wednesday and the National Aboriginal Community Controlled Health Organisation (NACCHO) whose work has been instrumental in driving progress.

Paediatric Cardiologist and Deadly Heart Trek leader Dr Rob Justo said a notable achievement to come from the Deadly Heart Trek program.

"During the three major Treks, we screened over 2,700 young hearts and thankfully, we found plenty of healthy hearts," Dr Justo said.

"Unfortunately, we also diagnosed and treated 88 new RHD cases. This work demonstrates the importance of prevention and early detection and of course community engagement and empowerment, in the efforts to end RHD.

"Without rapid treatment, these young people will need, at best, a lifetime of care, and at worst, open heart surgery."

Ms Vicki Wade said, together, we can put an end to the suffering caused by rheumatic heart disease".

"If we accelerate comprehensive community action now and empower my people and accelerate investment, we can end this preventable disease," Ms Wade said.

The federal government has doubled the funding to assist with the elimination of RHD, which has been welcomed by advocates.

The funding allocation will be used to purchase portable echo screening equipment, however experts advise that more is needed.