It's not every day that late-night television viewers ponder the fate of tiny babies born with heart defects. Or the chance those babies will be able to get health insurance when they grow up.

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But then came Jimmy Kimmel's passionate monologue about his newborn son's life-threatening condition, tetralogy of Fallot, and the baby's successful open-heart operation.

In it, Kimmel also called attention to two issues on the front burner in Washington, D.C.: health insurance, especially related to coverage for pre-existing conditions, and federal funding for medical research.

For doctors who treat babies like Kimmel's, the wave of attention for these issues is welcome. With a replacement package for the Affordable Care Act now working its way through Congress, the future for these children — and others with major medical issues — may hinge on what happens in the next few days or weeks.

"In the form that passed the House, this legislation would only add to the many challenges already faced by families of children with congenital heart disease and the community of health providers who care for them," says Sara Pasquali, M.D., M.H.S., a pediatric cardiologist who specializes in treating such patients and researching their care. "We should be discussing policies to improve care and outcomes for these children, rather than adding additional hurdles to their care."

Congenital heart defects are the most common birth defect, affecting nearly 1 in every 100 births. Approximately 40,000 congenital heart operations are performed each year in the U.S., and it is estimated that up to 3 million individuals live with congenital heart disease in the country.

Pasquali, the co-director of the Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) program at U-M's C.S. Mott Children's Hospital, and the Janette Ferrantino Professor of Pediatrics, lays out some of the key health policy issues that affect children like Jimmy Kimmel's son:

Pre-existing conditions

One of the main issues Kimmel raised was insurance coverage for people with a pre-existing health condition. The bill passed by the U.S. House on Thursday allows for states to open the door for insurance companies to return to the practice of charging people more if they have a pre-existing condition. It also creates a pool of money for states to share, which could aid them in providing coverage for sick individuals who can't afford it on their own. But it's not known if this will be enough.

Although some federal protections would remain in place regarding coverage for sick newborns, the changes could open the door for insurers to charge parents more if the family switched insurance or did not have it to begin with.

Research conducted at the U-M Congenital Heart Center has also shown that the type of coverage, or lack thereof, can also influence access to other important services for these patients, such as neurodevelopmental screenings. "This is critical as we know that many of these children can be impacted by developmental and cognitive issues later in life," says Pasquali.

Finally, since most children with congenital heart disease now survive into adulthood, these coverage issues and the cost of insurance for pre-existing conditions can affect congenital heart disease survivors when they transition from pediatric to adult congenital care. Gaps in medical care during this time are common, and changing or losing insurance coverage has been identified as an important factor, says Pasquali.

Medicaid funding

Medicaid covers about half of all children with congenital heart disease. The House bill would dramatically reduce the amount of Medicaid funding states receive from the federal government. There is concern that this would significantly impact the insurance coverage of children with heart disease and other serious illnesses, and affect the types of services they receive.  

Caps on coverage

Yearly and lifetime limits on coverage for those who have insurance through their parents' employers is also an important issue for this population. Some children, particularly those who are critically ill, may reach their lifetime cap with in the first few years of life. The bill as passed would allow the insurance companies that cover workers at large companies to put caps back in place; caps are not allowed under the Affordable Care Act.

Research funding

As Kimmel discussed in his monologue, the current administration is proposing significant cuts to the National Institutes of Health. While not included in the temporary budget Congress recently passed, the proposed cuts may be discussed again for the budget year beginning in October.

"Funding from the NIH and other federal agencies is critical to supporting research to improve care and outcomes for children with congenital heart disease," says Pasquali. "It is especially important in this population because it is known that fewer dollars go to support research for children with heart disease compared to children with other childhood diseases or to adults."

She and her colleagues at nine other congenital heart centers currently work together in the NIH-funded Pediatric Heart Network, to conduct studies that would not be possible at any one center alone, including the first ever randomized clinical trial in the field. NIH and other federal funds also support several other ongoing U-M studies focused on congenital heart disease, including those geared toward identifying and disseminating best practices for critically ill pediatric cardiac patients, developing better metrics to assess quality of congenital heart care, and studies of new medications and techniques to image the heart.  None of these studies would have been conducted without the support of NIH and other federal funding, notes Pasquali.

Differences in care and outcomes

While overall outcomes have improved dramatically over the past three decades for the 40,000 children each year who undergo congenital heart surgery in the U.S., work by Pasquali and others has highlighted that further efforts are needed to improve the system of care delivery and reduce disparities to ensure that all children have access to excellent care.

In the U.S., congenital heart care is decentralized across more than 125 hospitals, many of which might perform only a few of each kind of heart operation annually.

For example, nearly two-thirds perform fewer than 10 Norwood operations a year. Outcomes across these centers are highly variable. At some centers, 90 percent of children survive, while at others, only 60 percent do. This means two children with the same heart disease and risk factors may have very different outcomes depending on where they are treated, says Pasquali.

Multiple efforts are underway to promote and evaluate efforts addressing these issues.

Although hospitals aren't required to report their congenital heart outcomes to the public, several states and the Society of Thoracic Surgeons recently began voluntary reporting programs. Patient and parent advocacy groups, such as the Pediatric Congenital Heart Association, and teams of researchers including Pasquali and colleagues, are working to enhance public reporting initiatives by making data more readily available and transparent to patients and families, and developing better ways to assess quality.

Additional efforts have focused on collaborative quality improvement initiatives, such as the Pediatric Cardiac Critical Care Consortium (PC4) based at U-M, which involve congenital heart programs collecting and sharing data to better understand and implement best practices. These initiatives have been shown to be effective in reducing variation and improving outcomes across participating sites.

In other countries, governments have required regionalization of congenital heart care to send patients to "centers of excellence," or hospitals with the best outcomes. U.S. healthcare policymakers have not pursued this, though regionalization or collaboration among centers has begun to occur in some areas of the country. Policies supporting more regionalized and specialized care, particularly for patients with high-complexity heart disease, should be further explored, according to Pasquali.

"While public reporting and collaborative quality improvement initiatives are important, not all hospitals participate or may have the necessary resources to implement changes in care," she notes.

As the debate in Washington continues, Pasquali says she expects patients, parents and congenital heart disease advocacy groups to continue to raise awareness and advocate for the needs of children and families affected by congenital heart disease. She also notes it's important for researchers, physicians and other health professionals to participate in these efforts and share their findings with elected officials.

Taken together, these efforts can build a better future for children such as Kimmel's.