President Joe Biden is set to sign the Congenital Heart Reauthorization Act Nov. 22, extending and expanding the CDC's National Congenital Heart Disease Research, Surveillance and Awareness Program.
The bill requires HHS to draft a congressional report on the CDC's awareness program, including the program's efforts in training the healthcare workforce to treat congenital heart disease. The bill also requires the development of improvement strategies for the program.
Yuli Kim, MD, cardiologist and medical director of the Philadelphia Adult Congenital Heart Center at the University of Pennsylvania, spoke with Becker's about the bill.
Editor's note: Responses have been lightly edited for clarity and length.
Question: What challenges has the Philadelphia Adult Congenital Heart Center faced when caring for congenital heart disease patients?
Dr. Yuli Kim: We care for adults with CHD, which means it is a chronic condition. We do not have a lot of answers for our patients, who are living longer with a better quality of life than ever before.
For example, there is newer understanding on neurocognitive outcomes and psychological distress in our patients. Mental health is not a priority in our current healthcare system and one of the biggest challenges we have at our center is connecting patients with support services.
Another challenge stems from the lack of a universal system of surveillance for CHD patients. Because we have not been able to track patients and their outcomes, I am not able to give my patients answers to questions as simple as, “What do you estimate my life expectancy to be?”
Last, there is so little research on CHD and our patients are often excluded from clinical trials. We are in sore need of data-driven decision-making as well as investment in innovative research that could directly affect our patients' quality of life.
Q: With only 500 adult CHD cardiologists serving over 1.4 million adult patients, how do you hope the Congenital Heart Reauthorization Act will address such a large gap in the workforce?
YK: Given the rate at which the number of adults with CHD is growing, we need to expand the workforce not just in number but in the pace in which we expand.
This requires a rehaul of the reimbursement system for adult CHD cardiologists to attract young talent into the subspecialty, more subsidies for fellowship programs to train future adult CHD cardiologists, and an incentive program for hospitals to prioritize and support adult CHD clinics and patients in their health systems.
With a shortage in adult CHD providers, this leaves other important research and advocacy efforts by adult CHD providers unattended. This feels like watching a slow motion train wreck about to happen, but I believe that the Congenital Heart Reauthorization Act can make a substantial impact on changing course.
Q: What specific expansions would you like to see in congenital heart disease research and surveillance efforts at the CDC?
YK: There is so much we do not know about the epidemiology and natural history of CHD in the U.S. This is a big ask, but we need some system to track and collect data to create a robust U.S. data source. We do not really know how many people in the U.S. have CHD. The numbers are extrapolated from the Canadian province of Quebec! I think the CDC, if funded appropriately, could get us there.
Q: What role can health systems play in supporting the development of new programs to train CHD specialists, CHD research and surveillance efforts?
YK: Health systems can invest in their faculty who are interested in CHD, help them obtain training and provide resources to build a CHD program. They can adjust reimbursement demands and relative value unit structure for adult CHD, and subsidize time for providers to participate in non-clinical duties such as research, training and advocacy.
Health systems need to recognize that for subspecialties as small as adult CHD, providers need extra allowance to move the needle forward for our patients.