Background
CHD affects approximately 1 in 100 children born in the United States, with around 2.5 in 1000 presenting with complex forms of the condition. Reference Hoffman and Kaplan1 While some simple CHDs may resolve on their own or require minimal intervention, complex CHDs demand intensive, lifelong care. This often includes multiple open-heart surgeries during childhood, extended hospitalisations, long-term physical and mental health therapies, and in some cases, mechanical circulatory support or organ transplantation. Despite their relative rarity, complex CHDs account for a striking 15.1% of all paediatric hospitalisation costs Reference Simeone, Oster, Cassell, Armour, Gray and Honein2 —a disproportionate share that underscores the high resource demands these conditions impose.
Yet, despite these clinical and financial realities, there is a critical lack of comprehensive data quantifying the broader economic burden of complex CHDs—both on affected families and on society at large. In addition, rare diseases such as complex CHDs are too often perceived as lacking public health relevance, which in turn limits their access to federal funding. Reference Ary, Ross and Erard3 This gap in data and perception obscures the true impact of these conditions, making it difficult for advocates, researchers, and healthcare providers to articulate their value and urgency to policymakers and funding agencies. In 2019, for instance, the National Institutes of Health dedicated just $38 million of its $39 billion budget to rare disease research—roughly one-tenth of one percent. Reference Zhu, Nguyễn and Sheils4 The National Institutes of Health did not create a specific funding category for CHDs until 2016. Since then, funding has remained limited, stagnant, and substantially lower than what is available for common cardiac diseases. In 2023, for example, the National Institutes of Health’s categorical funding for coronary heart disease was approximately 2.7 times higher than its funding for CHD. 5
Families living with complex CHDs consistently report profound financial stress. Reference McClung, Glidewell and Farr6 Caregivers face challenges related to securing adequate health insurance, balancing employment with caregiving responsibilities, and navigating assistance programmes that often exclude those deemed to earn “too much” to qualify, yet too little to afford care. Reference Delaney, Fu and Conway7 Compared to families of children with other special healthcare needs, those managing CHDs report greater economic hardship. Reference McClung, Glidewell and Farr6 The path forward—for patients and families alike—continues to be marked by both medical and financial hurdles, because although advances in diagnostics and surgical interventions have significantly improved survival rates, most complex CHDs remain incurable, with care focused on palliation rather than cures.
The persistent lack of curative options makes it even more urgent to invest in research—not only to improve clinical outcomes but also to mitigate long-term economic burdens. Without adequate investment in research, the pipeline for innovation slows: fewer studies, fewer clinical trials, and fewer opportunities to develop transformative treatments. Reference Zhu, Nguyễn and Sheils4 To change this trajectory, here, we quantify the economic realities of complex CHDs on both individual families and the broader United States healthcare system as a first essential step towards unlocking the recognition, resources, and innovation these patients need.
Methodology
Institutional Review Board approval was obtained for this non-interventional cross-sectional study, consisting of 1) literature review, 2) key opinion leader interviews, 3) patient and caregiver survey, 4) financial analysis, and 5) financial comparison to mass market diseases. Direct medical costs, indirect medical costs, and mortality costs were measured.
IQVIA, a global provider of advanced analytics, technology solutions, and clinical research services to the life sciences industry, was chosen to lead the research and data analysis.
To analyse complex CHDs and have an accurate and representative financial analysis, it was critical to examine complex CHDs with a relatively consistent presentation, primary diagnosis, and distinct treatment pathway. Six diseases were selected for inclusion in the study that met these criteria: Dextro-Transposition of the Great Arteries, Hypoplastic Left Heart Syndrome, Pulmonary Atresia with Intact Ventricular Septum, Tetralogy of Fallot, Tricuspid Atresia, and Truncus Arteriosus, regardless of subtype, disease complexity, or complication (such as transplant or comorbidities). Patients who also had a diagnosis of Down Syndrome, Spina Bifida, or Edwards Syndrome were excluded. Recognizing that patient care and medical treatment vary significantly throughout the lifespan, the patient journey within each of the six CHDs was broken down into specific age segments for study: 0–5, 6–17, and 18+.
Literature review
A review of existing literature was conducted to gain an in-depth understanding of the disease journey for each of the six complex CHDs, including:
• Disease ontology: origin, unmet needs, and segmentation of patients based on age groups, and known genetic pre-dispositions.
• Pathophysiology: Disease’s underlying mechanism and its effect on patients’ long-term outcomes.
• Epidemiology: Prevalence and incidence including any disease sub-classifications to estimate associated burden differences based on patient characteristics and to estimate overall disease burden.
• Standard of care: Frequency and duration of usage of specific medical interventions and approved therapies, and the estimated costs associated with these treatments and related hospitalisations.
• Medical journey: Key stakeholders and treatment interventions involved at different stages, including disease diagnosis, progression, treatment, and follow-up; understanding of the general patient journey, the interventions and comorbidities that can occur at various points in the patient journey, and the percentage of patients that experience each specific intervention or comorbidity.
A comprehensive list of search terms was developed, and an extensive review of all available literature was conducted utilising PubMed and Cortellis. The IQVIA staff reviewed all research to identify studies of greatest relevance using the following pre-determined rules: newer studies/last update, publication in high-impact journals, and number of times the publication was cited. An Excel document was utilised to collect sources of data to avoid duplication and to assess quality. In order to avoid bias, two members of the research review team screened each publication against the pre-determined rules to determine relevance.
Key opinion leader interviews
A series of key opinion leader interviews was conducted with experts treating patients with complex CHDs, as well as experts in hospital administration and health economics, to ensure a deeper understanding of the specific challenges, drivers of direct medical costs, and economic implications of the patient journey for the six complex CHDs. IQVIA utilised a third-party provider, Athenaeum, to assist in sourcing the key opinion leader interviews through a national search for these 60–90-minute telephone interviews that utilised a series of discussion prompts. All participants provided informed consent to participate and were provided remuneration for their time with the value of compensation aligned with fair market value. Key opinion leader interviews were conducted with 26 individuals: 18 physicians (paediatric and adult CHD cardiologists, and cardiac surgeons), 3 payers from large-sized private insurance providers, 2 health economists, and 3 paediatric hospital administrators.
The goals of key opinion leader interviews with physicians were to: 1) corroborate/dispel information noted from the literature review, including details of the patient journey and 2) fill in gaps in knowledge not noted in the literature or provide clarification where there was conflicting information in the literature. In utilising numbers provided by key opinion leader interviews, the median was utilised in cost calculations.
The remainder of the key opinion leader interviews, conducted with private insurance payers, hospital administrators, and health economists, were intended to corroborate what was gleaned through the literature review and gain deeper clarity based on specific areas of expertise.
Patient and caregiver survey
A patient and caregiver survey was conducted to: 1) validate literature and key opinion leader interview input regarding the number of annual visits to cardiologists and other specialists; and 2) measure indirect medical costs incurred by patients and families, including out-of-pocket costs not covered by insurance as well as lost productivity costs.
All survey participants provided informed consent and were screened for eligibility before the survey questions were presented. As part of the consent process, participants gave their consent for their data to be analysed and published anonymously. All respondents received remuneration for their time, aligned with fair market value.
The survey tool comprised of a series of empirical multiple-choice, open-ended ranking, and rating parameter questions. Questions were developed based on a series of standardised patient and caregiver questions used by IQVIA in similar studies and informed by information about the complex CHD patient journey uncovered through the literature review and key opinion leader interviews. Responses provided quantitative data on indirect costs with the opportunity to provide open-ended information about economic challenges and the financial impact of complex CHDs.
Survey participants were recruited via two methods:
• Country-wide panel: IQVIA contracted with a third-party vendor, M3 Global Research, which has a US panel of patients who have signed up to provide insights for research.
• Patient advocacy organisations: Five CHD patient advocacy organisations were asked to share information about the survey on their social media channels.
The survey was conducted online and took approximately 25 minutes to complete, inclusive of informed consent plus survey questions. Survey “outliers” in terms of speed (those who responded in less than half of the average time to complete the survey across all respondents) as well as those who provided inappropriate answers to open-ended questions were removed and not factored into the survey results. In addition, it was essential to eliminate “outliers” with significantly higher physician visits and out-of-pocket costs. This was due to the fact that the survey could not validate whether these respondents had experienced significant comorbidities or complications such as transplant. These higher-than-typical costs due to complications and comorbidities were, however, accounted for in the literature review and key opinion leader interviews.
See Supplementary Table 1 for all survey results.
Financial analysis
Direct medical cost analysis: Based on the literature reviews and key opinion leader interviews, the percentage of patients with each disease who required a specific direct medical expense, that is, an intervention, procedure, therapy, medication, or hospitalisation, within each of several patient age categories (0–5 years, 6–17 years, and 18+ years) was estimated. The estimated number of medical specialists visited and the number of visits within a year to each type of specialist were validated by the patient and caregiver survey.
The following publicly available cost databases, as well as two of IQVIA’s proprietary databases, were utilised to estimate per-unit costs for each direct medical expense for patients on Medicare, Medicaid, and private insurance:
• Milliman Cost estimates (Private healthcare, Medicare, Medicaid);
• Medicare costs—CMS.gov (Medicare), CMS.gov, Kaiser Family Foundation (Private, Medicaid), Congressional Research Service, and National Center for Education Statistics;
• IQVIA MIDAS: Assesses worldwide healthcare markets to track products in 693 therapeutic classes, provides estimated product volumes, trends, and market share through retail and non-retail channels across 77 countries; and
• IQVIA NSP: Measures dollar and unit sales for pharmaceutical products across multiple distribution channels, including retail, mail, and non-retail.
Through these sources, the percentage of complex CHD patients on each type of insurance was estimated as well as an average per-unit cost for each direct medical expense. Costs were estimated based on average costs for the years 2023–2024. These average per-unit costs were applied to the number of patients requiring that direct medical expense across each age category to assign a direct medical cost for each age category per disease type as well as a lifetime direct medical cost per disease.
See Supplementary Table 2 for data sources and cost modelling.
Indirect medical cost analysis: Indirect medical costs were calculated from the patient and caregiver survey. The survey gathered information in five areas related to indirect costs:
-
1. Specialty care (measured as costs in the past 12 months);
-
2. Prenatal specialty care for caregivers seen after the child’s diagnosis if prenatally diagnosed;
-
3. Lost productivity (measured as costs in the past 12 months);
-
4. Out-of-pocket medical costs such as co-pays, feeding supplies, durable medical equipment (measured as costs in the past 12 months); and
-
5. Other indirect costs not covered by insurance, such as home modifications and travel and accommodation expenses required to receive care.
See Supplementary Table 1 for patient and caregiver survey results.
Secondary literature sources were utilised to assign costs to transportation expenses, home modification expenses, and lost productivity. These per-unit costs were combined with the patient and caregiver survey data to assign indirect costs for each patient age range.
See Supplementary Table 2 for cost modelling of indirect costs.
Mortality cost analysis: Value of Statistical Life was utilised as the measure for mortality, derived from the 2023 United States Department of Transportation Departmental Guidance on Valuation of a Statistical Life in Economic Analysis. 8
See Supplementary Table 2 for cost modelling of mortality costs.
A detailed overview of IQVIA’s cost modelling is contained in Supplemental Table 2 for each of the following:
• Per-patient annual direct and indirect cost for each complex CHD by age category (0–5, 6–17, and 18+);
• Mortality cost for each complex CHD, measured utilising the Value of Statistical Life; and
• Per-patient lifetime financial burden for each complex CHD.
IQVIA’s research also identified the life expectancy for each disease (utilised to calculate mortality via Value of Statistical Life) and the prevalence of each of the six complex CHDs in the United States. These calculations were used for calculating the annual and lifetime costs of all complex CHD patients.
The following is a summary of the types of costs measured by IQVIA and the data sources utilised.
We utilised the per-patient direct and indirect costs across the age categories to identify an average per-patient annual direct and indirect cost for each disease. We then used the life expectancy for each disease as a proxy for the number of years spent living with the disease since these are lifelong diseases present from birth. This data was utilised to calculate the lifetime direct and indirect costs for each of the six diseases.
See Supplementary Table 3 for cost calculations.
Calculating the costs of all complex CHDS
We then sought to extrapolate costs from the six complex CHDs to assess the cost of all complex CHD diagnoses, all patients as an indicator of the total burden on the United States economy. Because the six complex CHDs studied represent a range of complexities and associated healthcare costs, data included in this analysis can be reasonably extrapolated to assess the costs of all complex CHDs. As 25% of all CHDs are complex, and there are an estimated 2.4 million patients living in the United States with a CHD, Reference Gilboa, Devine and Kucik9 we projected that 600,000 people are currently living with a complex CHD. This extrapolated prevalence was utilised to calculate the following:
• Annual cost for all complex CHD patients—as a marker of the annual burden of complex CHD on the United States economy; and
• Lifetime financial burden for all complex CHD patients—as a marker of the lifetime financial burden of complex CHD on the United States economy.
These cost calculations are contained in Supplementary Table 3.
Comparison to mass market diseases
In order to contextualise the cost of complex CHD, we sought to compare the cost of these rare cardiac diseases to one or more common diseases that are well-known to the general public and policy makers because they affect large numbers of individuals. Because complex CHDs are lifelong diseases, it was not deemed essential that the comparator disease be a paediatric disease. A previous report on the cost of common chronic diseases was utilised to identify a list of potential mass market diseases for comparison. Reference Waters and T.M.I.10 An internet search was conducted for each of these diseases to identify which diseases had published data available for the number of patients in the United States, per-patient annual direct and indirect costs, per-patient direct and indirect lifetime costs, average age of disease onset, and number of life years lost to enable comparable cost analyses. Two common cardiac diseases were selected as comparators—coronary heart disease and congestive heart failure. Reference Waters and T.M.I.10–Reference Patel, Kielhorn, Yurgin and Hernandez14
Both coronary heart disease and congestive heart failure had published data available on the number of patients in the United States, the per-patient annual direct and indirect costs, and the number of life years lost. We were therefore able to calculate and compare both coronary heart disease and congestive heart failure to complex CHDs for each of the following:
• Annual per-patient direct and indirect costs;
• Annual direct and indirect costs for all patients;
• Per-patient annual cost, inclusive of direct costs, indirect costs, and mortality; and
• Annual costs for all patients, inclusive of direct costs, indirect costs, and mortality.
See Supplementary Table 3 for cost calculations.
Finally, we utilised available data for one of the comparator diseases—congestive heart failure—for which published data was available for the average age of disease onset to estimate the number of years living with the disease. This enabled application of the methodology we utilised for our complex CHD analysis to calculate the lifetime costs. The median age of onset for congestive heart failure is 59 years, Reference Ditah, Rahman and Agbor13 and the estimated number of life years lost to the disease is 9.64. Reference Patel, Kielhorn, Yurgin and Hernandez14 We therefore estimated an average of 8 years spent living with the disease for patients. This enabled us to compare congestive heart failure to complex CHDs in the following cost areas:
• Lifetime per-patient direct and indirect costs;
• Lifetime direct and indirect costs for all patients;
• Per-patient lifetime costs, inclusive of direct costs, indirect costs, and mortality; and
• Lifetime costs for all patients, inclusive of direct costs, indirect costs, and mortality.
See Supplementary Table 3 for cost calculations.
Findings: the financial and economic burden on patients, families, and the United States economy
This analysis reveals that complex CHDs place a profoundly disproportionate financial and economic burden on individual patients and families, as well as on the United States healthcare system and broader economy. This burden is evident both on a per-patient basis and at the population level, annually and across the lifespan—and stands in stark contrast to the impact of more common cardiovascular conditions.
High annual per-patient costs
The average annual cost of care for an individual with complex CHDs is nearly $50,000, with more than 45%, or $22,900, paid out-of-pocket by patients and caregivers as non-reimbursed healthcare expenditures (Fig. 1a). Notably, this average masks even steeper costs for certain diagnoses. For example, Hypoplastic Left Heart Syndrome incurs an average cost of $95,000 per patient, with nearly $43,000 borne directly by families.
Figure 1. Per patient annual and lifetime direct and indirect costs for the six complex CHDs studied and averaged together and compared to common cardiac diseases
Beyond direct costs, complex CHDs erode productivity and financial stability. Approximately, 10% of parents report having to change jobs, reduce work hours, or exit the workforce entirely to care for their child. Those who remain in the workforce report missing an average of one month of work annually. Similarly, adult patients with complex CHDs report missing one month per year of work due to medical needs. Among children, these conditions lead to an average of 21 missed days of school each year, exceeding the threshold for chronic absenteeism (18 days annually for any reason). 15
High per-patient lifetime financial burden
The average lifetime economic cost per patient with complex CHDs is a staggering $2.1 million, encompassing both direct and indirect costs. Of this, 43-63% are indirect costs that are paid directly by the patients and families. The early years are especially costly: within just the first five years of life, the average cost is $650,000 per child, representing nearly one third (31%) of total lifetime costs (Fig. 1b). Families are responsible for $190,000 in out-of-pocket expenses during this initial period alone. The accrual of medical costs year upon year results in a compounding, cyclical burden of medical debt, and economic hardship from which many families may never recover.
Disparity in per-patient cost compared to common cardiac diseases
Compared to more prevalent cardiac diseases, the per-patient economic burden of complex CHDs is significantly and disproportionately more expensive. Annually, the combined direct and indirect costs of complex CHDs are:
• 4 times higher than those of coronary heart disease
• 8 times higher than congestive heart failure (Fig. 1c)
Over a lifetime, the disparity widens. Compared to congestive heart failure, complex CHDs are 44 times more expensive, with:
• Direct costs for complex CHDs 32 times higher
• Indirect costs 74 times higher (Fig. 1d)
The cost of premature mortality for complex CHDs is substantial. Of those who survive beyond childhood, patients with complex CHDs survive to a median age of 46, losing 31 years of life. Additional studies have found that patients with the most complex form of CHDs, single ventricle, have a median age of only 28 years, a loss of 49 years of life. Reference Diller, Kempny and Alonso-Gonzalez16 In contrast, patients with congestive heart failure lose an average of 9 years. Reference Patel, Kielhorn, Yurgin and Hernandez14
Outsized population-level burden, despite lower prevalence
Despite their lower prevalence, complex CHDs impose a staggering cost across all patients, inclusive of direct, indirect, and mortality costs:
• Annual cost: $74 billion
• Total lifetime economic burden: $3.35 trillion
This cost is disproportionately high relative to the patient population. For example, congestive heart failure affects approximately 10 times more individuals, yet its total annual economic burden is only twice that of complex CHDs. In addition, coronary artery disease impacts 30 times more individuals, but its total annual economic burden is just six times greater (Fig. 2a).
Figure 2. Annual and lifetime United States burden of complex CHDs (all patients), with and without mortality, compared to common cardiac diseases
When quantified over the lifetime, the imbalance deepens: congestive heart failure, which impacts 10 times more patients, has a total lifetime burden only 3 times higher than that of complex CHDs (Fig. 2c).
Even when mortality costs are excluded, the disparities persist. For example, the direct and indirect annual cost of congestive heart failure is just 1.5 times higher and that of coronary artery disease 8.5 times greater than for complex CHDs—despite massive differences in prevalence -- 10X and 30X respectively (Fig. 2b). Strikingly, the lifetime direct and indirect costs of complex CHDs are five times higher than those of congestive heart failure, despite impacting 90% fewer people (Fig. 2d).
Taken together, these findings underscore the reality that complex CHDs exert a uniquely heavy financial toll—not only on affected families navigating the day-to-day care, but also on the national economy. The compounding nature of costs, depth of lost productivity, and the outsized impact of early mortality all contribute to a burden that far exceeds that of more common, better-funded cardiovascular diseases.
Discussion
Here, we have demonstrated that the financial burden of complex CHDs extends well beyond the considerable clinical challenges of managing a life-altering and life-threatening condition. For many families, especially during the earliest and most intensive phases of care, the experience is marked not only by medical complexity but also by relentless economic strain. Out-of-pocket costs spanning co-pays, deductibles, co-insurance, travel to receive specialised care, and additional therapies are often compounded by lost income when caregivers reduce work hours or leave the workforce entirely. Over time, these pressures do not dissipate. Instead, they accumulate into a cycle of medical debt and economic hardship that few families escape. The burden is both financial and emotional, as families live under the persistent weight of trauma, worry, and stress.
Limitations
This study represents one of the most comprehensive attempts to quantify the national economic burden of complex CHDs, but several important limitations must be acknowledged.
First, while we prioritised reputable sources—including CMS, Milliman, and IQVIA—much of the analysis necessarily relied on single-source datasets due to a lack of comprehensive, peer-reviewed, publicly available cost data for rare paediatric cardiovascular conditions. This limited our ability to conduct sensitivity analyses, calculate confidence intervals, or apply probabilistic modelling. As a result, findings are presented as deterministic point estimates. We acknowledge this constraint and highlight it as a key opportunity for future refinement.
Second, the extrapolation of national costs was based on a subset of six complex CHDs selected for their clinical and economic diversity. While this sample provides a useful approximation, the findings may not fully capture the heterogeneity or full burden of the broader complex CHD population.
Third, although indirect cost estimates were derived through a structured national survey of patients and caregivers, these data are subject to inherent limitations, including modest sample sizes, potential selection bias, and reliance on self-report. Despite robust exclusion criteria and validation procedures, these responses reflect real-world perspectives rather than clinically adjudicated data.
Fourth, we focused on economic burden broadly and did not disaggregate outcomes by race, ethnicity, geography, or socio-economic status. We recognise that well-documented disparities exist in CHD diagnosis, treatment access, and outcomes. Reference Bayne, Garry and Albert17 These factors likely compound financial hardship and should be a priority for future research. Similarly, the study did not assess the economic consequences of loss to care among adolescents and adults with CHD—a well-documented phenomenon that likely results in worsened clinical outcomes and increased long-term costs. Reference Mackie, Ionescu-Ittu, Therrien, Pilote, Abrahamowicz and Marelli18
Finally, this study did not account for the intangible and psychosocial costs borne by patients and families, including emotional stress, reduced quality of life, caregiving demands, and long-term mental health consequences. While these are difficult to quantify in monetary terms, they represent a profound component of the true burden of disease.
Impact
Despite the study limitations, it is clear that the impact on individual families is profound. Yet, it is only part of the story. In aggregate, complex CHDs impose an outsized economic burden on the healthcare system and broader economy. This analysis estimates the annual national cost of complex CHDs at $74 billion, with a lifetime economic impact exceeding $3.34 trillion. Yet, the economic toll of complex CHDs has remained invisible—undocumented in public discourse and underappreciated in funding and policy decisions. This invisibility has real consequences: when disease burden is unknown or unacknowledged, the system fails to prioritise it.
This lack of recognition has directly contributed to chronic underinvestment in research and innovation. Despite the high costs and lifelong impact, federal and philanthropic funding have not kept pace with need. Consequently, outcomes for many patients have remained static. A study of patients with Hypoplastic Left Heart Syndrome who underwent Norwood or Hybrid procedures between 1984 and 2022 found that overall survival improved until 2003 and then plateaued, Reference Gaynor, Mahle and Ittenbach19 and the Single Ventricle Reconstruction III Trial of Hypoplastic Left Heart Syndrome found that only 57% of patients had transplant-free survival at 12 years post stage I surgery. Reference Goldberg, Trachtenberg and William Gaynor20 These sobering outcomes highlight the limitations of current palliative strategies and underscore the urgent need for curative approaches and improved care options. Yet, without meaningful increases in research support, scientific progress is likely to remain incremental and insufficient to drive real change.
Moreover, critical gaps remain in our understanding of how this burden is distributed across populations. Socio-economic status, race, and ethnicity are well-documented determinants of health in CHD Reference Bayne, Garry and Albert17 yet were beyond the scope of this analysis. Future research must investigate how these interacting features shape financial burden and access to care, especially for underrepresented groups who may face compounding disadvantages. Similarly, lapses in care among adult patients, many of whom are completely lost to care, Reference Mackie, Ionescu-Ittu, Therrien, Pilote, Abrahamowicz and Marelli18 were an unmeasured component that is likely a substantial contributor to long-term economic impact. Thus, the findings here should be viewed as a conservative economic floor.
Recommendations
Families and advocacy organisations cannot bear the burden of reform alone—resources, reach, and institutional access are required to effect large-scale change. Addressing the economic and clinical burden of complex CHDs will require a comprehensive and sustained response—one that centres on research as both a scientific and economic imperative. Interdisciplinary research spanning developmental biology, genomics, tissue engineering, clinical science, and health economics is needed to uncover the aetiologies of complex CHDs, explain the variability in outcomes, and design next-generation therapies. This effort will require coordinated, sustained investment from both the public and private sectors. The engagement of the clinical and scientific community is essential to shifting the narrative—and these clinicians and researchers are uniquely positioned to help drive the change. As experts who sit at the intersection of science, care delivery, and lived experience, they have both the credibility and responsibility to advocate for increased funding, support infrastructure, and patient-centred innovation. By leveraging their collective expertise, clinicians and researchers can help reframe complex CHDs not as a rare paediatric issue but as a national priority worthy of sustained attention, investment, and action.
Institutional advocacy is equally important. Hospitals and health systems should be encouraged to implement policies that address day-to-day economic strain experienced by families, such as subsidising travel and meals, reducing thresholds for financial assistance, and embedding financial counselling and navigation services into clinical care, particularly at diagnosis and transition points. These are tangible changes that can make an immediate difference while broader systems catch up.
In sum, the data presented here reveal a reality that is at once urgent and actionable. The economic burden of complex CHDs is immense, disproportionate, and largely unrecognised outside of the families who carry the financial burden. Yet, it affects not only individual families but also the healthcare systems and economies that surround them. Through research, advocacy, and institutional leadership, the biomedical community can help ensure that the burden of complex CHDs is well understood and adequately funded to drive research and policy change that decreases costs, improves care and outcomes for patients, and improves quality of life for families.
Supplementary material
To view supplementary material for this article, please visit https://doi.org/10.1017/S1047951125109256.
Acknowledgements
The authors extend their thanks to IQVIA for their research contributing to this report, led by Pedro Andreu, PhD, Principal, and N. John Atay, Associate Principal. The authors also wish to thank Megan Freeland of Additional Ventures for her assistance in reviewing and editing the manuscript.
Financial support
Additional Ventures Foundation, Palo Alto, California.
Competing interests
The authors declare none.
Use of Artificial Intelligence
ChatGPT (OpenAI, https://chat.openai.com) was utilised to develop portions of the text in this document. The authors subsequently reviewed and edited all content.
Open access
