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Five things you should know about RHD

4 Jul 2022

The Rheumatic Heart Disease Endgame Strategy launched at the end of 2020. Some jurisdictions are now developing and launching their own RHD Action Plans. With the goal of eliminating RHD by 2031, we asked Dr Rosemary Wyber, Senior Research Fellow with END RHD, to simplify this complex preventable disease into five key tenets.

1. Inac­tion pos­es a sig­nif­i­cant health burden.

When the Endgame Strat­e­gy was launched by the End Rheumat­ic Heart Dis­ease Cen­tre of Research Excel­lence (END RHD CRE) and Telethon Kids Insti­tute in late 2020, over 5000 Indige­nous Aus­tralians were liv­ing with ARF or RHD.

With­out fur­ther action we can expect more than 10,000 new cas­es of acute rheumat­ic fever (ARF) – which is the pre­ced­ing ele­ment of rheumat­ic heart dis­ease (RHD) itself – by 2031,” Rose­mary says. Of those, more than 1300 would devel­op severe RHD and over 500 peo­ple would die with RHD.

RHD has a major impact on people’s lives and com­mu­ni­ties. This is a dev­as­tat­ing dis­ease, and it affects young peo­ple, often in the prime of their lives, who’ve got sig­nif­i­cant respon­si­bil­i­ties, cul­tur­al­ly, as care­givers or fam­i­ly mem­bers in their communities.

The peak age is 11 years that peo­ple are at risk of devel­op­ing ARF, and then they devel­op chron­ic RHD in their teenage and ear­ly adult life.

Peo­ple die pre­ma­ture­ly or live with sig­nif­i­cant bur­den of chron­ic disease.”

2. RHD is a chron­ic dis­ease stem­ming from child­hood infections.

Peo­ple get an infec­tion with the Strep A germ, or strep throat’,” Rose­mary says.

This is more com­mon in places where peo­ple live in over­crowd­ed hous­es or have inad­e­quate access to health hygiene infra­struc­ture, like oppor­tu­ni­ties to wash hands or clothing.

Because of such fac­tors, peo­ple get a lot of Strep A infec­tions ear­ly in their lives. We think there is a prim­ing effect when peo­ple are exposed to mul­ti­ple infec­tions, so their body devel­ops an autoim­mune response to sub­se­quent infection.

This dam­ages the heart valves and the joints – that’s ARF. Once peo­ple have had a severe or recur­rent episodes of ARF, they go on to devel­op scar­ring of the heart valves, which we call RHD

It’s a tricky dis­ease; it starts off with an infec­tious cause, which makes us think about envi­ron­men­tal and social deter­mi­nants of health, but if a per­son has RHD, they live with it for the rest of their lives. In that way it’s asso­ci­at­ed with the needs of ongo­ing chron­ic dis­ease care.”

Image sup­plied by Telethon Kids Institute.

3. RHD is insep­a­ra­ble from social deter­mi­nants of health and Clos­ing the Gap.

Decades ago, ARF and RHD were not uncom­mon through­out Aus­tralia, includ­ing in cap­i­tal cities and non-Indige­nous com­mu­ni­ties,” Rose­mary says.

How­ev­er, as access to health hygiene infra­struc­ture and liv­ing stan­dards has improved in a major­i­ty of Aus­tralia, the dis­ease has increas­ing­ly con­tract­ed and now only occurs at high rates among Abo­rig­i­nal and Tor­res Strait Islander Peo­ple, par­tic­u­lar­ly in remote communities.”

This impacts people’s lives in var­i­ous ways.

RHD increas­es the risk of preg­nan­cy com­pli­ca­tions,” Rose­mary says. 

It impacts edu­ca­tion and employ­ment. There are issues around peo­ple with RHD inter­act­ing with the jus­tice and judi­cial sys­tem and receiv­ing the con­sis­tent, reg­u­lar treat­ment they need. 

In many ways RHD is emblem­at­ic of the Clos­ing the Gap issues. 

The oppor­tu­ni­ty to end RHD is an oppor­tu­ni­ty to tack­le many of the Clos­ing the Gap tar­gets and, more impor­tant­ly, do it in a way that aligns to the pri­or­i­ty reform areas of the Clos­ing the Gap part­ner­ship agreement.

It’s a tan­gi­ble exam­ple of the many cracks in the sys­tem that con­tin­ue to hin­der health out­comes for Abo­rig­i­nal and Tor­res Strait Islander peoples.”

4. We have the evi­dence and it’s time for action.

Research is cur­rent­ly under way to devel­op a Strep A Vac­cine and bet­ter diag­nos­tic test­ing for ARF, and eval­u­ate dis­ease pro­gram and pol­i­cy options, but it’s time to roll up the sleeves.

At the end of the day in non-Indige­nous Aus­tralia, we didn’t need those tech­ni­cal advances for RHD to essen­tial­ly be elim­i­nat­ed,” Rose­mary says.

Abo­rig­i­nal and Tor­res Strait Islander organ­i­sa­tions are lead­ing the work to end RHD, and they need appro­pri­ate fund­ing to achieve that.

[At END RHD CRE], we were very priv­i­leged to have the oppor­tu­ni­ty to put togeth­er an evi­dence-based, research-informed strategy.

[Now], we see our­selves as hav­ing a sup­port­ing func­tion, includ­ing find­ing oppor­tu­ni­ties to accel­er­ate the work.

This is no longer a research ques­tion, but an imple­men­ta­tion question.”

Dal­las McK­e­own, Min­is­ter for Health & Ambu­lance Ser­vices Queens­land Yvette D’ath, and Kather­ine Isbis­ter at the launch of the End­ing Rheumat­ic Heart Dis­ease Queens­land First Nations Strat­e­gy 2021 – 2024’ in Cairns, April 2022.

5. Tack­ling RHD will have an impact on many oth­er pre­ventable diseases.

We’re empa­thet­ic to the huge amount of work com­ing across pri­ma­ry health desks at the moment,” Rose­mary says.

Every­body is con­scious that remote pri­ma­ry care staff are exhaust­ed and that there’s a work­force cri­sis. COVID-19 has silenced so many com­pet­ing priorities.”

How­ev­er, there’s over­lap between dif­fer­ent pri­or­i­ties, and solu­tions and end goals are often shared.

Cul­tur­al­ly safe, high-qual­i­ty, remote pri­ma­ry care is crit­i­cal to all this work,” she says. 

For dis­ease-spe­cif­ic projects – includ­ing RHD, tra­choma, ear dis­ease and chron­ic kid­ney dis­ease – the core is about sup­port­ing com­pre­hen­sive pri­ma­ry care ser­vices and mak­ing sure that our voic­es are con­sis­tent about that, because none of these con­di­tions are just a tech­ni­cal fix.

By tack­ling the root dri­vers of ill health, we’ve got the oppor­tu­ni­ty to improve out­comes across a range of diseases.

[Our research] has cer­tain­ly taught us the impor­tance of a remote pri­ma­ry care work­force, and resourc­ing and mod­els of care and sys­tems of deliv­ery, which real­ly make it pos­si­ble for Abo­rig­i­nal and Tor­res Strait com­mu­ni­ties to receive the absolute best qual­i­ty of care avail­able in the coun­try, as close to home as possible.” 

You can catch Rose­mary at the 2022 CRANAplus Annu­al Con­fer­ence in Ade­laide from 4 – 6 Octo­ber. Head to crana​con​fer​ence​.com for more infor­ma­tion and to register.