$2.1 million: That’s the lifetime cost of having complex CHD
A new report shows the immense impact congenital heart disease has on family finances and the U.S. economy
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Last year, I had a procedure during which a highly trained doctor burned tiny pieces of my heart in an attempt to correct a rhythm problem. The ablation cost $124,679, including a one-night hospital stay. That did not include $7,345 billed for the work of my electrophysiologist or the $4,950 for other miscellaneous services. Or the roughly $100 in Uber fares, the two days of work I missed, the $507 last-minute flight my sister took to come look after me, the day of work she missed, the professional Covid-19 test I took beforehand, the $50 co-pays for several pre- and post-ablation appointments, and on and on and on. (Thank goodness for good health insurance and relatively low deductibles.)
It costs a lot to have this heart of mine.
In fact, complex congenital heart disease costs an average of $49,449 per patient per year and almost $2.1 million over the course of a life, according to a new report from Additional Ventures, an organization that funds research into single-ventricle congenital heart disease and other issues. Complex CHD also has a disproportionate impact on the U.S. healthcare system and the economy, the report found.
“We all kind of logically understand those first five years [of a patient’s life] would be incredibly expensive,” said Kirstie Keller, vice president of programs at Additional Ventures and co-author of the report, “but it was something about seeing the numbers and the reality for the patients and families.”
A deep dive into six CHDs
Roughly 2.4 million Americans are living with CHD, including about 600,000, or 25%, with complex congenital heart defects. “Despite their lifelong impact,” the report notes, “the burden of cCHDs is often minimized, referred to as a set of rare, pediatric diseases that do not carry the broad significance to the healthcare system or our economy, overall.”
To understand the impact to patients, families and the U.S. economy, researchers looked at the cost of six complex CHDs—dextro-transposition of the great arteries, hypoplastic left heart syndrome, pulmonary atresia with intact ventricular septum, tetralogy of Fallot, tricuspid atresia and truncus arteriosus—and extrapolated those to the wider population. (Initially, they wanted to study all CHDs in the U.S. but found too much variation in diagnoses, outcomes and treatments; these six had more standardized treatments and medical coding.)
Their findings are based on reviews of hundreds of papers and medical claims data, interviews with 30 cardiologists and other healthcare professionals, and surveys of 219 patients and caregivers, including 61 adult patients. The study doesn’t account for the impacts of race, ethnicity or socioeconomic status, or the economic impacts of patients lost to care (which are the majority in the U.S.).
Beyond medical expenses
Complex CHD comes with direct costs, such as medical procedures, prescription drugs, hospitalization and home healthcare. But 48% of the annual per-patient expense, or $22,900, goes to so-called indirect costs, such as work absences, transportation and reduced productivity for caregivers. Those expenses are often paid for by patients and families, not health insurance. Adult patients missed roughly 19 days of work a year to attend to their medical care, according to the report.
“The biggest shock was that the direct and indirect costs were nearly equivalent,” Keller said.
The cost of complex CHD often begins accruing right after birth, in the form of multiple complex surgeries and hospitalizations, as well as intense caregiving demands. Thirty-one percent of lifetime costs occur in the first five years of life, with an average $131,000 per patient per year, compared with about $35,500 per year in adulthood, according to the report. Roughly 10% of parents said they’d switched jobs, reduced their work hours or left the workforce to care for a child with complex CHD. These outlays compound over the course of families’ and patients’ lives.
“It was like, oh, yeah, yep, sure, that's exactly what we've lived,” said Diane Pickles, program director at Additional Ventures and co-author of the report, who has an adult son with HLHS and left her job for several years when he was young. “What you're really creating for many, many, many families, maybe even most families, is a lifetime cycle of debt and pain and difficulty on top of what they're already living.”
“This is the floor of the burden”
The $2.1 million lifetime cost is also likely an undercount. To arrive at that number, the researchers multiplied the annual per-patient cost by the average lifespan for each of the six complex CHDs.1 However, they had to rely on published data for average lifespans, and what’s out there doesn’t necessarily give an accurate picture of how much longer people are living today, Keller and Pickles said. That means that the lifetime economic burden is likely higher for patients surviving into adulthood now.
“In some ways, we've actually undersold the economic burden,” Keller said. “To say then to a policy maker, ‘This is actually the floor, this is the floor of the burden, we expect that it's actually higher than this,’ I think there's some power in that because the numbers are already so darn high.”
An outsize impact on the U.S. economy
Policymakers might overlook CHD because they assume the economic impact is much smaller compared with other cardiovascular diseases. However, complex CHD has a big impact, given its relative rarity, the research shows.
Combined, the six complex CHDs studied have an annual U.S. economic burden of $9.5 billion, or an estimated $25.4 billion across all complex CHDs. When you factor in mortality costs—that is, the economic impact of shortened lifespans—the numbers are eye-watering: $74 billion annually.
That is just under half of the annual economic burden of congestive heart failure ($163 billion), which affects 10 times as many patients, or 6.2 million Americans. It is just over six times the burden of coronary heart disease ($441 billion), which affects 30 times as many patients, or 18.2 million.
“It's hard that you have to show an economic argument for what should be just a deeply understandable problem,” Keller said. “You're seeing little children that are going through incredibly difficult and complex surgeries and families that are experiencing this, and kids grow up. It's not a pediatric disease. Kids grow up.”
A bid to change policy
From patient programs to device development to clinical advances, the level of support fails to address the CHD community’s real need, the report said. Next to no inclusive financial programs are available to patients and families, and federal and philanthropic investment in research is “inadequate to realistically bring new therapies to market,” it said.
“What you're really creating for many, many, many families, maybe even most families, is a lifetime cycle of debt and pain and difficulty on top of what they're already living.” —Diane Pickles, co-author of the report
Additional Ventures itself was founded by a wealthy family with a personal connection to a patient with a single ventricle, according to Keller. The umbrella organization encompasses a private foundation that funds single-ventricle research and clinical care, as well as entities that work on climate and democracy issues. The latest report was endorsed by groups like the Adult Congenital Heart Association, Conquering CHD and the Children’s Heart Foundation.
Keller and Pickles said they hope the research arms advocacy groups with information that will change policy and gives researchers a stronger argument for the importance of their proposals when they’re applying for funding. “They can say, look, this isn't just a rare disease or a rare pediatric disease,” Keller said.
What did you think of the findings? What has been your experience with the costs of CHD?
You can see the average lifespans in the appendix of the report, but beware that they might be tough to read.
I agree that 2.1 mil is an undercount. For life events like under education and an in ability to have children and job lock were huge and devastating. Sometimes having to choose to get testing like a blood draw just this week is weighed by when I can afford the copay. I am still paying for my surgery from last year, my 5th ohs and the blood draw will add another 800$ to it. At 63 I am wondering if it has been worth it.
Thank you for this article! All I can say is that I am eternally thankful for the Affordable Care Act! This is a serious undercount in my son's case. His pacemaker implant in 2021 alone cost more than 1500000.