A Call to Action for Children's Heart Health

At the Annual Meeting and Scientific Sessions of the International Society for Heart and Lung Transplantation (ISHLT) in Boston, Dr. Angela Lorts delivered a stark message: children with life-threatening heart conditions desperately need better mechanical circulatory support (MCS) devices.

"Pediatric cardiac diseases are severely underfunded and understudied. We often resort to modifying adult therapies, which simply aren't suitable for kids," stated Dr. Lorts, who heads the Ventricular Assist Device Program at Cincinnati Children's Hospital.

The Reality for Pediatric Heart Patients

Heart failure in children can stem from acquired or genetic disorders and congenital heart defects that surgical repairs cannot resolve. Currently, about 500 pediatric heart transplants and 300 heart device implants occur each year in the U.S. alone.

Children awaiting a heart transplant frequently rely on MCS devices that assist the heart in pumping oxygen-rich blood throughout the body. Unfortunately, most of these devices are designed for adults, leaving children at a disadvantage.

The Challenges of Off-Label Device Use

Dr. Lorts emphasized the critical shortcomings of using off-label devices for children, which not only hinders innovation but also bypasses essential data collection for safety and effectiveness.

"While we appreciate having some pediatric-specific options, they are outdated and associated with high adverse event rates. Furthermore, demand for these devices often exceeds supply, leaving many children without access to vital treatments when they need them most," she lamented.

Hospitalization: A Heart-Wrenching Reality

Many young patients who receive pediatric MCS devices must remain hospitalized, sometimes for six months to a year, waiting for a new heart. "We need to change this. These kids should be able to live at home with their devices, just like adults can. It's not just a matter of comfort—it's essential for their emotional well-being."

Uniting for Change: The ACTION Network

In response to this crisis, Dr. Lorts and her team founded the ACTION Network, an international collaboration of 70 centers and 1,500 healthcare providers focused on raising awareness and funding for pediatric heart devices. They are working closely with the U.S. Food and Drug Administration (FDA) to explore the use of adult mechanical devices in younger patients.

A Glimmer of Hope on the Horizon

Thanks to partnerships with various manufacturers, promising new devices tailored for children are in development. The ACTION Network is also focusing on capturing real-world data alongside clinical trials to ensure the safety and efficacy of these innovations.

The Need for Systemic Change

Dr. Lorts underscored a fundamental issue within healthcare: a lack of novel therapies specifically designed for children. "We often cobble together adult solutions, leading to unnecessary deaths among children who desperately need appropriate devices. We can and must do better."

The time for change is now. We must advocate for more investment in pediatric heart technology to save lives and bring children back home to their families.