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The sombre statistics of an entirely preventable disease

Sore throats are an inevitable part of childhood, no matter where in the world one lives. However for those children living in poor, under-resourced and marginalised societies of the world, this could mean a childhood either cut short by crippling heart failure or the need for open-heart surgery. Rheumatic heart disease, a permanent condition affecting the heart valves and can result in heart failure, arrhythmias (irregular heartbeat), and stroke, is entirely preventable by treating streptococcal sore throats at the outset. Those who live with the condition in developing countries are young, largely female, and suffering with a significant disease. My team and I conducted a recent study featuring 25 hospitals in developing countries (12 African nations, Yemen, and India), which once again exposed the sombre statistics of this disease.

There were several important findings of our study. First, it revealed the stark reality of the patients affected by the disease. The median age of the 3,343 patients enrolled was only 28, with two-thirds of them being female. The majority were in a severe condition with established heart failure, and evidence of atrial fibrillation (an irregular and often abnormally fast heart rate) and pulmonary hypertension (raised blood pressure in the pulmonary artery). These complications imply long-standing disease with further potential for additional consequences such as stroke, commonly caused by rheumatic heart disease in the developing world. Such advanced disease may require invasive intervention such as percutaneous or surgical management, which is often not available in the countries that need it the most. Our second finding was the clear disparities in both the management and the resources to deal with severe disease in patients living in low-income countries compared to those living in high-income countries. Only 1% of the patients in low income countries underwent a percutaneous procedure, compared to 11% in lower middle income countries, while 8% of the patients in low-income countries had had surgery compared to 61% in middle-income countries. Cardiac surgery is at an absolute premium in developing countries, with only a handful of established teaching and training units in Africa capable of conducting high-volume paediatric and adult cardiac surgery, despite the great need.

Rheumatic heart disease affects the most vulnerable people and once again, this is evident, not only in the youth of the cohort but also their gender. Two-thirds of the patients enrolled in the study were women, 82.5% of which were of childbearing age. Valve disease results in significant physiological effects during pregnancy and thus rheumatic heart disease is associated with maternal mortality and fetal loss. A previous study of 46 pregnant Senegalese women with rheumatic heart disease reported 17 maternal deaths (34%), six fetal deaths, and five therapeutic abortions.

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Children Burkina Faso. Public domain via Pixabay

Women in Africa, Yemen, and India are young and seriously affected by their disease, however almost all were not on contraception. Moreover, some were already pregnant and managed with warfarin, a drug known to cause fetal loss, fetal abnormalities, and additional complications during pregnancy.

Rheumatic heart disease is a permanent condition, with medical management only limiting the progression of the disease. A key management tool is secondary prevention with penicillin prophylaxis to stop further attacks of streptococcus, which exacerbates valve damage. For severely affected post-operative patients, lifelong secondary prevention is vital, yet only 55% of patients were prescribed secondary prophylaxis. This percentage was even lower (29%) in middle-income countries, despite the fact that these countries have published national guidelines dictating lifelong use of penicillin. Thus, physicians dealing with patients with rheumatic heart disease need to urgently review the reproductive services and advice given to women with rheumatic heart disease, while adhering more closely to national and international guidelines for secondary prophylaxis.

Patients with stroke, atrial fibrillation, and mechanical valves are managed in part with anticoagulants, predominantly with warfarin. This drug, although inexpensive, requires regular monitoring and review. This is another major area of concern as a third of patients with the need for oral anticoagulation were not prescribed them; almost half of those on anticoagulants had inappropriate monitoring. There are several reasons for this, including the unavailability of medication and a lack of monitoring. It is clear that there are multiple challenges at every level of dealing with this disease, many reflecting critical health system roadblocks such as delivery of safe and affordable medication.

What does the future hold for the millions (estimated at over 30 million) living with and newly diagnosed with this disease? This study represents not only the reality of patients living in developing countries but also a group of physicians and researchers committed to describe the burden of this disease in the developing world while seeking innovative, affordable, and accountable solutions to the challenges set forth in this report. Several have been involved in recent publications, research and awareness events and the determination to address this disease in all spheres is evident.

The re-emergence of rheumatic heart disease as a priority condition and the sombre profile of this disease deserves the fullest attention of the world.

Heading image: Very high magnification micrograph of rheumatic heart disease by Nephron. CC BY-SA 3.0 via Wikimedia Commons.

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