A partnership supported by the Medtronic Foundation is working with the broader community and health systems to take a holistic approach to treating and eventually ending RHD.
It starts with a sore throat. Painful swallowing. A high fever. Could it be strep throat?
In an apartment in New York City, or a rambler outside of Houston, Texas, or a flat in London, the child is taken to an urgent care center, tested and given a prescription for antibiotics. She’s home in bed within a few hours.
But if this child is resting in a home in the Sengerema District of Tanzania – or in many towns like it, mainly in the developing world – the sore throat might be treated with rest and an herbal medication. A few days later, she may be back at school, back to helping her mother care for her younger siblings, or back to playing with friends along the dusty streets in her crowded neighborhood.
The illness is not over. The step bacteria are still in her body, and a few weeks later she develops another fever, painful joints and chest pain. She now has rheumatic fever, and the same bacteria that caused a bad sore throat are now putting her heart at risk of permanent damage.
Heart damage caused by rheumatic fever is known as rheumatic heart disease, or RHD. It most commonly occurs after an infection with streptococcus bacteria that is left untreated or undertreated. The bacteria may first infect the throat as strep throat and then move to the heart, causing rheumatic fever. Inflammation from rheumatic fever can then damage the heart’s valves.[i] About two-thirds of patients who have rheumatic fever will develop heart valve problems.[ii] The damaged valves may not close properly or may be blocked due to scarring, which can allow blood to flow back into the heart. At this point, surgery may be needed to prevent an irregular heart rhythm, stroke or heart failure.
“The heart valves are like doors. They let the blood go in and out of the heart,” explained Dr. Glory Simon Joseph, a pediatric cardiologist in Tanzania. “Rheumatic heart disease affects these valves and they start to leak. That causes the heart to expand. When it becomes too large, it can fail.”
In developed countries, RHD was largely eliminated after the 1950s because strep throat is quickly assessed in clinics or urgent care centers and patients receive a 10-day course of antibiotics. It continues to impact children and young adults living in underserved countries, especially in Africa, Asia and the Pacific.[iii] About 33 million people worldwide have RHD today and about 320,000 lose their life to the condition each year, according to the World Heart Federation.[iv] About 80 percent of the world’s population continues to be at risk for RHD.[v]
“We can prevent it 100 percent,” Dr. Glory said. “Once we treat strep throat, we don’t end up getting rheumatic heart disease.”
Dr. Glory is part of RHD Action (http://rhdaction.org/) in Tanzania, a global movement of organizations supported by the Medtronic Foundation that has created a holistic approach to stop the spread of RHD in the developing world. Its work includes education, strep throat and RHD screenings, medical worker training, clinical support and advocacy. The goal is to create sustainable programs that can then be integrated into the country’s health system.
“We are reaching out to the villages to educate people about what strep is. We tell them the side effects if you don’t treat it. We tell them to go get antibiotics and bring all of your children in to be checked,” said Dr. Glory.
When people live in overcrowded areas, like many people do in remote Tanzania, strep can spread quickly. Dr. Glory explained that many people aren’t aware of the proper treatment and may use traditional herbal medicines instead of antibiotics.
“Too many times, we’re finding patients at the end stages of the disease. They have difficulty breathing and they think they have tuberculosis or pneumonia. They don’t know they have RHD,” Dr. Glory said.
Patients face many challenges accessing treatment. They may have to travel hundreds of miles for proper heart care. Many won’t have the financial ability to pay for treatment once they are diagnosed. And even those who seek treatment may have trouble finding the right specialist because of a severe physician shortage.
Training medical workers to make sure more people are diagnosed early is critical to saving more people from the effects of RHD. The coalition provides greater access to echocardiograms, a type of ultrasound screening that shows the heart’s valves and how blood moves through the heart.
“We’re training people who have had no echocardiography and ultrasound training or need a refresher training. We’re increasing the pool of people who are trained to do screening exams and we’re bringing them closer to the community, closer to the ground,” said Renae Stafford, a technical and clinical advisor to the program.
“Part of our work is to bring care closer to the people – where they live and where they work. We bring services closer, train people and provide the equipment to perform the exams,” Renae said. “Then we set up the links between the community hospital and the referral center. We’re strengthening the whole system and bringing care closer to the community.”
Outreach to schools is another critical step in catching and preventing RHD. Dr. Glory and her colleagues educate children and teachers and provide on-site strep testing. Those who are found to be infected are then treated with antibiotics and screened with an echocardiogram.
“We screen all the children in schools. Whoever is found to have RHD is started on medication, and then we follow up and we help them get heart surgery,” said Dr. Glory.
A recent survey in area schools found few people connected symptoms of strep like sore throat with RHD.
“For them, it was just a normal thing to have a sore throat, and later you get rid of it,” said Dr. Wemalie Mwatani, who leads community outreach efforts through the coalition. “It was important for them to understand how it starts and how it progresses to RHD. We help teachers and children understand how it is transmitted and how it starts – the signs and symptoms. And we help them understand how to get treatment if they have symptoms of RHD.”
But it’s not just school children who are at risk. The coalition also works to train maternal health workers and screen pregnant mothers, who may first notice symptoms of RHD when they are pregnant.
“We know women here become pregnant at a fairly young age, and they may start having symptoms of RHD when they are pregnant,” said Renae. “If you have heart failure in pregnancy, that’s not good for the mother or baby, so we layer our screening program on to the material health program.”
Importantly, the screenings are closely integrated with the country’s health system. Patients are referred to area clinics and hospitals and health workers are trained in proper diagnosis so that the effort can be sustainable in the long run.
“The most sustainable thing you can do is provide people with everything they need to do their job. That’s what we’re doing,” said Renae
RHD Action is a global movement to reduce the incidence of RHD. According to the World Heart Federation, RHD is the most commonly acquired heart disease in those under age 25.[vi] It has set a goal of reducing premature deaths from rheumatic fever and RHD by 25 percent in those under age 25 by 2025, aligned to the World Health Organization and the Sustainable Development Goals. It’s a goal people like Dr. Glory find achievable, because this is a disease that can be quickly treated if caught early.
“We are reaching a lot of patients,” Dr. Glory said. “I wish we could do more screenings. I wish we could do more to educate people. The hardest thing for me is seeing a patient dying of RHD, which is 100 percent preventable.”
Work is accelerating across the global following a 2018 World Health Organization resolution recognizing rheumatic fever and RHD as global health priorities.[vii] The resolution acknowledges the number of people living with RHD is comparable to the number living with HIV. Governments in all six WHO regions committed to taking action to prevent it, including increasing access to care for those living with RHD, expanding access to penicillin to treat strep throat, and training local workforces in recognizing and treating the conditions.[viii]
“Before this resolution, RHD wasn’t on the global health agenda. It’s largely been ignored since it was eliminated in high-income countries,” said Jeremiah Mwangi, who leads a global non-profit organization focused on preventing RHD and previously led RHD policy and advocacy at the World Heart Federation as part of RHD Action.
The global health community didn’t realize how widespread and critical this condition had become because it didn’t have adequate data to prove it, according to Jeremiah. Academic researchers were among the first to draw attention how widespread RHD is globally. Data collection is now an important component of the RHDA. Coalition members are also working with local governments to integrate RHD data collection, prevention and care into existing health programs.
“Often, this condition has no leadership. Is it a childhood disease? Is it a maternal problem? Is it a noncommunicable disease? Governments may be slow to address it because they don’t know which department should own it. It’s fallen through the cracks,” said Jeremiah. Global resources and local leadership can accelerate efforts on the front lines of care.
For example, in Uganda, RHDA worked through partner organizations to integrate screening, treatment – which includes monthly injections of penicillin – and referral for cardiac surgery with the country’s maternal and child health and HIV care programs. It is also helping establish a national registry to track RHD and monitor patient care and outcomes. The work is being done in close partnership with the Ugandan government, so that over time, the program can be sustained by the country’s health system.
RHD Action is also seeing successes in Kenya, Fiji, Nepal and Timor. These early successes now are serving as models for other countries working to address RHD.
“We’re trying to create connections. We want to draw lines between like countries so that they can benefit from what’s happened before,” said Jeremiah.
The WHO’s resolution acknowledges that the work to address RHD is just getting started. But experts agree that the goal of eliminating RHD can be achieved.
“We know high-income countries deal with this easily. We know there are ways to prevent this disease. We need greater access to penicillin. We need high-level engagement at the government level, and we need champions at the local level. We need data to identify where people need help,” Jeremiah said. “Importantly, we need to stop ignoring and neglecting this program. People don’t realize that a sore throat can result in complicated heart surgery. They have to understand how serious a sore throat can be. This is a condition we can prevent.”
[i] What is Rheumatic Heart Disease? RHD Action. https://www.rhdaustralia.org.au/what-rheumatic-heart-disease. Accessed Sept. 6, 2018.
[ii] Position statement of the World Heart Federation on the prevention and control of rheumatic heart disease. World Heart Federation. https://www.world-heart-federation.org/wp-content/uploads/2017/05/nrcardio.2013.34WHF_position_statement_on_RHD_english.pdf. Sept. 6, 2018.
[iii] “The RHD Action movement is united to end the burden of RHD worldwide.” RHD Action. http://rhdaction.org/. Accessed Sept. 6, 2018.
[iv] Rheumatic Heart Disease. World Heart Federation. https://www.world-heart-federation.org/programmes/rheumatic-heart-disease/. Accessed Sept. 6, 2018.
[v] Carapetis JR. Rheumatic Heart Disease in Developing Countries. N Engl J Med 2007; 357:439-441. https://www.nejm.org/doi/full/10.1056/NEJMp078039. Aug. 2, 2007. Accessed Sept. 6, 2018.
[vi] Rheumatic Heart Disease. World Heart Federation. https://www.world-heart-federation.org/programmes/rheumatic-heart-disease/. Accessed Sept. 6, 2018.
[vii] Governments Adopt a Global Resolution on Rheumatic Fever and Rheumatic Heart Disease at the World Health Assembly. World Heart Federation. https://www.world-heart-federation.org/breaking-news-governments-adopt-global-resolution-rheumatic-fever-rheumatic-heart-disease-world-health-assembly/. May 25, 2018. Accessed Sept. 10, 2018.
[viii] Governments Adopt a Global Resolution on Rheumatic Fever and Rheumatic Heart Disease at the World Health Assembly. World Heart Federation. https://www.world-heart-federation.org/breaking-news-governments-adopt-global-resolution-rheumatic-fever-rheumatic-heart-disease-world-health-assembly/. May 25, 2018. Accessed Sept. 10, 2018.