Stopping a Silent Killer

For the small community of doctors and researchers studying rheumatic heart disease (RHD), a life-threatening chronic condition that can develop after bacterial infections, familiarity isn’t always a good thing.

“This is an incredibly small field where we all know each other, and it’s wonderfully collaborative. But we always say at meetings, we need to know more people who aren’t here,” said Andrea Beaton, M.D., a pediatric cardiologist at Cincinnati Children’s Hospital, during a recent DGHI Think Global event on strategies to manage the disease, which affects an estimated 33 million people in low- and middle-income countries. “It’s very important we expand the workforce for research and clinical care in RHD if we’re going to impact this disease globally.”

RHD can develop from infections such as strep throat or scarlet fever. If not treated, the infections can cause damage to heart muscles and valves that can require surgery. While rare in high-income countries, RHD is one of the most common forms of heart disease affecting young people in low- and middle-income countries, where children may have repeated exposure to bacterial infections that are not treated. Poverty and lack of access to healthcare increase the risks of advanced cases, which can lead to heart failure

During the Oct. 29 panel, speakers highlighted effective ways to prevent and treat RHD, including better identification and treatment of the infections that can lead to RHD and the use of echocardiogram tests to spot early signs of heart damage before it progresses.  But they also said a lack of knowledge and comprehensive data about RHD has prevented the disease from climbing higher on countries’ list of healthcare priorities.

“Prioritizing funding and education are critical as this is a burden to our population,” said Lillian Mbau, M.D., a cardiology specialist in Kenya, who noted that RHD is the third most common form of cardiovascular disease in the country. Mbau said more funding would allow hospitals to train health workers to look for signs of the disease and refer patients for earlier treatment

Beaton described her work with the Rheumatic Heart Disease Research Collaborative in Uganda, which launched an RHD prevention program called ADUNU. With support from the country’s Ministry of Health, ADUNU has enabled screening of more than 120,000 people for RHD and helped more than 2,000 people receive treatment for the disease.

“We should not be waiting longer to act on RHD, and we know enough to act now, even as we’re innovating for the future,” Beaton said.

At the same time, countries should not lose sight of the critical importance of access to surgery for patients suffering advanced heart damage, noted JaBaris Swain, M.D.,Swain, a cardiothoracic surgeon, has completed surgeries on young adults and adolescents with heart damage as part of Team Heart, a nonprofit organization providing cardiovascular care in Rwanda.

While allowing that many under-resourced health systems may be challenged to provide affordable access to surgery, Swain said the transformative impact for RHD patients should not be overlooked. He shared the story of a patient named Ernest who lived in Rwanda at a time when surgical resources were scarce. Team Heart flew Ernest to Boston for a valve replacement, which proved successful. Once healed, Ernest graduated from high school and became a medical resident with a focus in cardiology. Swain described Ernest’s success as a full circle moment.

“When there’s the blanket statement of surgery is too expensive or we shouldn’t invest, I always go back to Ernest,” Swain said. “It shows how one intervention can change the entire trajectory of the life of an individual.”

Rebecca Lumsden, M.D., an assistant professor of medicine at Duke and the Hubert-Yeargan Center for Global Health, said many of the doctors who work on RHD are drawn by the life-changing power of such stories.

“It was an early driver of my interest in women’s cardiovascular disease,” said Lumsden, who moderated the event. “It tugs on a lot of people’s heart strings from a humanitarian, research and care paradigm.”