Scanning the north for an end to rheumatic heart disease
This year is proving a milestone in the coordination of will and resources to end this insidious disease which affects socio-economically vulnerable people all over the globe, and which, alarmingly has the some of the highest rates in northern Australia and in New Zealand. May 11 saw the launch of the END RHD Centre of Research Excellence, a program funded by the National Health and Medical Research Council (NHMRC), which unites 20 investigators, 16 institutions and a range of collaborators in identifying the steps need to end RHD in Australia. GE Healthcare will bring its expertise to the cause, having identified RHD as its target project for the region for 2015.
What’s RHD? Our collective memory falls short. “As recently as the 1950s, the most common reason for a child to be in a hospital bed in Australia was rheumatic fever or rheumatic heart disease,” says Carapetis.
With this disease, one thing, rheumatic fever, leads to another: rheumatic heart disease. “Basically, you get strep throat and the body’s immune system, in trying to fight that streptococcus infection, produces antibodies. For various reasons related to you as a person and to the bug itself, those antibodies, in addition to killing the strep, also damage your own heart—it’s an autoimmune reaction,” explains Carapetis.
The incidence of RHD in metropolitan Australia has declined to the point where doctors almost never see new cases, largely because of improved living conditions and access to medical care, says Carapetis. However, living conditions for Indigenous Australians in remote communities, and sometimes also in towns, are chronically overcrowded, which increases transmission of rheumatic fever from person to person, most frequently from child to child—kids aged 5 to 14 are the worst affected. If infection goes untreated, often unnoticed, it can cause damage to the heart valves, and can recur until the person, in their teens, twenties and thirties, has a severely damaged heart. In the Northern Territory in 2008, more than 2.5% of Aboriginal 25-34 year olds, and more than 3% of 34-44 year olds had RHD.
Your chances of being diagnosed and treated decrease as the distance between you and the nearest doctor grows.
Populations of Aboriginal and Torres Strait Islanders in Australia and of Maoris and Pacific Islanders in New Zealand have among the highest recorded rates of RHD in the world. And it has been neglected partly because it’s a complex disease to manage. Rheumatic fever is not a straightforward diagnosis—there’s no single test for it, but rather a checklist of symptoms, and any two doctors may differ in their interpretation of those symptoms. Once a person has rheumatic heart disease, the only proven way to prevent further damaging episodes of the fever is to administer monthly injections of penicillin—over a period of 10 years or more! Now imagine you’re 9 years old, living in a remote community in a two-bedroom house shared with 13 other people. Your chances of being diagnosed and treated decrease as the distance between you and the nearest doctor grows. The difficulties of potentially sticking to the penicillin regimen, even as you get older, are obvious.
A young Aboriginal woman with rheumatic heart disease may become pregnant before someone realises she has heart damage and she’ll need specialist care to increase her chances of giving birth to a healthy baby and surviving the birth; or the extra strain on the heart caused by being pregnant or eventually by giving birth, may cause her to die of heart failure.
Although Carapetis and his colleagues in the fight against RHD have done much to rewrite the guidelines for diagnosis and treatment of RHD and rheumatic fever (the United States recently adopted most aspects of the Australian criteria for diagnosis), more concerted efforts are needed. The vision for RhEACH (Rheumatic Heart Disease. Evidence. Advocacy. Communication. Hope.), an organisation co-hosted by Telethon Kids Institute and the University of Cape Town, is simple: “Children and young people have the right to be protected from the lifetime effects of rheumatic heart disease.”
Improved living conditions are fundamental to eliminating RHD, but organisations worldwide are also beginning to advocate for screening of children in affected communities, so that they can receive treatment in the early stages of the disease. Says Carapetis, “There’s a worldwide movement to try to reduce the costs, improve the flexibility, improve the feasibility of screening for rheumatic heart disease.” Portable echocardiograms, such as GE’s handheld V-scan, which could potentially be operated by nurses or basically trained operators in remote settings, who can transfer the scans digitally for analysis by cardiologists in regional or metropolitan areas, have huge potential to help.
For pregnant women living in remote communities, Carapetis envisages a time in the near future when, at their first antenatal check-up, perhaps by a visiting health carer, both a woman’s developing baby and her heart will be scanned by handheld ultrasound, to enable diagnosis in time to make a difference to the outcome for mother and child. The Australian Maternity Outcomes Surveillance System (AMOSS), which is conducting an NHMRC study into RHD in pregnancy, is hoping to develop approaches “that will have a direct benefit to over 1,500 disproportionately Indigenous women with RHD likely to give birth in ANZ over the next 10 years,” it said in recent outline of the study and its goals.
By the year 2020, says Carapetis, the End RHD Centre of Research Excellence, which will have a specific focus on RHD in pregnancy involving many of the AMOSS investigators, “will produce a roadmap for eliminating RHD in Australia … a very careful plan of all the things that are most likely to make a difference, how they can be incorporated into policy and practice, how much they will cost, and how they can be evaluated over time. It is the bringing together of the research, the clinical practice and policy and very importantly the experiences of people living with rheumatic heart disease, to say, this is a disease that a country like Australia should be able to get rid of.”
In December last year, GE signed a 10-year relationship agreement with the Telethon Kids’ Institute, the framework for which is being defined, but which includes skills and knowledge exchange and the development of an integrated research platform. Says Michael Ackland, CEO and president of GE Healthcare in Australia and New Zealand, “We want to ensure that the Telethon Kids Institute will flourish through access to our technical expertise, and conversely that GE Healthcare will thrive through engaging with end users at the cutting edge.”
Watch this short video to find out how the Telethon Institute helps kids. Source: Telethon Kids Institute
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