Getting to the Heart of the Matter: The Neglected 4.5 Billion

He was 16 years old and wondered if he would ever survive. Erneste had a bright future ahead, yet unfairness suddenly made everything fragile. After months of referrals across Rwanda while taking expensive drugs, improvement did not occur, and surgical treatment was the last resort. Slowly and little by little, Erneste’s heart condition worsened. He was no longer a typical 16-year old Rwandan boy playing football with his friends, but one of the millions fearfully waiting for a life-saving miracle.

Erneste was one of the 33 million people worldwide suffering from rheumatic heart disease and in dire need of cardiac surgical care to replace his damaged heart valve. His parents never finished secondary school and had to sell their assets to allow him to go to high school; paying $15,000 to receive surgery in India was a bridge too far. Rwanda had only 2 cardiologists and no cardiac surgeons for 12 million people, and the waiting list for cardiac surgical teams from the United States ran up to three years. Erneste did not have three years.

Rheumatic heart disease no longer exists in high-income countries, but affects millions of people living in low- and middle-income countries (LMICs). In high-income countries, timely detection and antibiotic treatment of rheumatic fever has prevented the severe complication of rheumatic heart disease. However, in LMICs, the diagnosis is often missed and the treatment not rarely too costly. Rheumatic fever slowly resolves, but in some patients gradual and repeated inflammation of the heart valve results in increasing failure of the normal valve function. Gradually, the heart fails, and for many, surgery is the only way to prevent death.

Erneste is not alone. Cardiovascular diseases are the leading killer in the world, with 17.9 million people dying each year. In many parts of the world, newborn babies die from a hole in their heart, a cause of death that is rarely seen in high-income countries. Young children die from rheumatic heart disease because their heart valves succumb; replacing it has become assembly line work. Mothers die from aortic dissections in road traffic accidents because treatment is unavailable and the blood banks are empty. Fathers do not get timely revascularization treatment for ischemic heart disease and suffer from fatal heart wall rupture. Millions die each year and many more lose their healthy lives living with cardiac conditions. The grim denouement is that 4.5 billion people worldwide lack cardiac surgical care when needed.

On September 27th, Heads of States and international organizations came together at the third High-Level Meeting (HLM3) on Non-Communicable Diseases (NCDs) at the 73rd United Nations General Assembly in New York. In these discussions, preventive measures such as lifestyle choices and primary care took center stage, and it seemed many forgot about the need for interventional care in the many cases and conditions of NCDs that are not preventable. Surgical care was once neglected, but increasingly gains recognition as an integral part of healthcare, due to its cross-cutting role across all disease groups and in strengthening health systems. “While designing universal health coverage, we must also cater to the poorest billion. We must recognize that access [to care] relates not just to medicines, but also to surgery given that 5 billion individuals lack access globally.”, said Dr. Sania Nishtar, Co-Chair of the World Health Organization’s Independent High-Level Commission on NCDs at the HLM3. Surgery is not a luxury, and receiving it should not be determined by where one is born or where one lives.

Erneste spoke up. He was lucky to have received philanthropic aid to fly to Boston and receive life-saving cardiac surgery. He recovered and decided to enter medical school in Kigali, where he will graduate next year. Erneste aims to pursue a career in cardiology or cardiac surgery and help his country and the patients that risk the fate he was able to avoid. But it could have ended differently, because surgical care remains unavailable for the large majority of the world. Perhaps once, Heads of State could, or would, listen to the treated surviving voices in their country, and realize that prevention is key, but not the sole goal. Maybe so, we can one day all listen to the millions of voices that were once lost because care was not available. And who knows - in 2030, these 4.5 billion people may no longer be neglected.