David M. Rubin, MD, MSCE Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PolicyLab, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, and Division of General Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania. Kathleen Noonan, JD PolicyLab, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, and Division of General Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania.

A New Opportunity to Define Health Care Reform for Children The magic year for the Affordable Care Act (ACA), 2014, is now upon us. The transition of millions of uninsured individuals into new insurance exchange markets has not been smooth, but as the challenges are addressed, our collective attention should turn to ensuring that the law meets the needs of the people it was intended to serve. This is especially true for children.

Celebrating the Achievement Regardless of its imperfections, the ACA’s goal of broad and affordable coverage for more than 32 million people is a major and unprecedented step forward.1 Large risk pools created by having all individuals covered are also critical in ending underwriting practices that exclude individuals with preexisting conditions. These protections, among others that limit cost sharing for primary health care, were clear wins for children. At the same time, we must reconcile the downstream effects on children from the law’s inherent focus on adults. Most health care spending is in aging adults; although children represent 25% of the US population, they account for only 13% of health care costs.2 Furthermore, earlier policy success enrolling children in Medicaid or the Children’s Health Insurance Program (CHIP) had already improved the landscape for children such that by 2010—the year in which the ACA was passed—more than 92% of children had health insurance coverage, in contrast with only about 78% of adults aged 18 to 64 years.3 Although expanding coverage to adults certainly benefits children if previously uninsured parents can access important services for themselves, the prioritization of adult coverage nevertheless left new challenges for families.

Identifying New Challenges

Corresponding Author: David M. Rubin, MD, MSCE, PolicyLab, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Attn: CHOP North, Ste 1533, Philadelphia, PA 19104 ([email protected] .edu).

The issues for children span every major area of health care reform, from coverage to access, quality of benefits, breadth of health care provider networks, cost sharing, and delivery system change. The critical need is sustaining high rates of coverage for children while maintaining affordable access. The hugely popular CHIP program closed the gap of uninsured children4 but faces an uncertain future unless it is reauthorized in 2015. Some believe the availability of subsidized insurance through exchanges might obviate the need for a separate CHIP program, although early evidence suggests that while benefits are similar to exchange plans, exchange cost sharing may be higher and network access reduced.5 The availability of new exchange plans in a market that includes Medicaid and CHIP may also increase churn for families (ie, the administrative burden of losing and reenrolling in different plans depending on income and


circumstance). Complicating matters is what has been deemed the “family glitch.” Currently, employees may elect to purchase an exchange plan with subsidies if the cost of participating in an employer’s plan exceeds 9.5% of their income. However, that determination only considers the cost of insuring themselves and not their families, which can be thousands of dollars more expensive. Without remedy, many families would slip through the cracks and fail to obtain affordable coverage.

Special Considerations for Children With Complex Needs The bulk of pediatric health care spending occurs among a small proportion of children with complex medical conditions.6 For these children—whether they have congenital heart disease, cystic fibrosis, or cancer—their health care provider network is quite limited and is often exclusive to large pediatric centers. By 2009, children with complex medical conditions accounted for 1 in 4 hospitalizations and most of the charges at the nation’s children’s hospitals.7 There is significant reason to be concerned that the law may have an unintended effect on restricting access for these families. As a case in point, in October, Seattle Children’s Hospital sued the state of Washington for failure to provide adequate coverage for children in 5 of 7 health insurance exchange plans. These 5 plans “tiered” the children’s hospital as out of network, exposing families to more onerous out-of-pocket costs. Healthy children or those with episodic conditions (like asthma or orthopedic injuries) may certainly have other affordable health care provider options in the community. However, for children with complex medical conditions, the children’s hospital may be their only choice. Tiering these children to narrow networks that exclude pediatric centers of excellence may penalize them much like pre-ACA policies that denied coverage owing to preexisting conditions or lifetime limits. While such tiering practices were not legislated through the ACA, addressing their consequences will likely require government action. These tiering practices are not the only challenges. Before the ACA, many states allowed children with complex medical needs to receive Social Security Income– Medicaid as wrap-around coverage to their private insurance. This issue has become more challenging as the ACA prohibits individuals from obtaining secondary insurance from the government (such as Medicaid) when receiving exchange coverage, as a protection from “crowding out” commercial plans. The net result may be the unavailability of wrap-around coverage of medically complex children whose families are receiving exchange subsidies. JAMA Pediatrics June 2014 Volume 168, Number 6

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Opinion Viewpoint

Building Toward the Future These challenges may be difficult to grasp for those who are not confronted with the day-to-day realities of sick children. However, the implications for families are not trivial: difficulty accessing coverage when they need it most, higher out-of-pocket costs, and narrower health care provider networks. This is a time of change, though. We always anticipated that while the ACA set us on a track toward expanded health insurance coverage, there would be lessons learned and modifications needed—much like the Social Security Act, which has been amended many times since 1965. For example, the pending debate on CHIP could lead to reauthorizing the program or alternatively reallocating the appropriation to underwrite the cost of correcting the famARTICLE INFORMATION Published Online: April 14, 2014. doi:10.1001/jamapediatrics.2014.221. Conflict of Interest Disclosures: None reported. REFERENCES 1. Congressional Budget Office. CBO’s Analysis of the Major Health Care Legislation Enacted in March 2010. Washington, DC: Congressional Budget Office; 2011. 2. Centers for Medicare and Medicaid Services. Total personal health care spending, by age group, calendar years, 1987, 1996, 1999, 2002, 2004.


ily glitch or subsidizing out-of-network expenses for medically complex children. Similarly, lack of congruity of CHIP to exchange plans could lead to regulation to ensure that children are not exposed to fewer benefits and more costs through exchange coverage. The ACA is an unprecedented step forward in covering millions who were uninsured, but it has also created a number of challenges for children that require thoughtful solutions; some of these challenges are already acute such as the case of Seattle Children’s Hospital. As the immediate ACA roll-out challenges are addressed and discussions proceed about necessary improvements, the children’s public health community will need to engage policy makers in solutions that acknowledge the unique needs of children. There are fixes that can make the ACA work better for children and families.

http://www.cms.gov/Research-Statistics-Data -and-Systems/Statistics-Trends-and-Reports /NationalHealthExpendData/Downloads/2004 -age-tables.pdf. Accessed November 26, 2013. 3. Cohen RA, Ward BW, Schiller JS. Health insurance coverage: early release of estimates from the National Health Interview Survey, 2010. http://www.cdc.gov/nchs/data/nhis/earlyrelease /insur201106.pdf. Accessed March 14, 2014. 4. US Department of Health and Human Services. Connecting Kids to Coverage: Continuing the Progress: 2010 CHIPRA Annual Report. Washington, DC: US Department of Health and Human Services; 2010.

5. US Government Accountability Office. Children’s Health Insurance: Information on Coverage of Services, Costs to Consumers, and Access to Care in CHIP and Other Sources of Insurance. Washington, DC: US Government Accountability Office; 2013. 6. Children’s Hospital Association. Optimizing Health Care for Children With Medical Complexity. Alexandria, VA: Children’s Hospital Association; 2013. 7. Berry JG, Hall M, Hall DE, et al. Inpatient growth and resource use in 28 children’s hospitals: a longitudinal, multi-institutional study. JAMA Pediatr. 2013;167(2):170-177.

JAMA Pediatrics June 2014 Volume 168, Number 6

Copyright 2014 American Medical Association. All rights reserved.

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A new opportunity to define health care reform for children.

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