Promoting children’s rights to health and well-being in the United States

Summary

The United States has a highly sophisticated pediatric healthcare system and spends more than any other country per capita on children’s healthcare. However, not all children have access to needed and affordable health care and the life expectancy and health outcomes of children in the country are worse than in any other industrialized nation. These nations typically offer universal healthcare for children as part of a robust recognition of a children’s rights framework. In 1989 the United Nations adopted the Convention on the Rights of the Child that recognizes the right of the child to the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. Currently the United States is the only United Nations member country that has not ratified the Convention on the Rights of the Child. This paper outlines the potential benefits of adopting a child rights approach based on the principles and provisions of the Convention on the Rights of the Child. The fact that countries who invest much less in healthcare compared to the United States can achieve better health outcomes provides the certainty that a solution is possible and within reach.

Introduction

“Our children are our greatest treasure. They are our future.”¹ As suggested in the famous Mandela quote,¹ the care of children is an important moral responsibility both because children are inherently vulnerable and because poor health and disease in childhood can profoundly affect children’s development and their health and well-being throughout their lives. Without good health, it is challenging for children to grow, develop, and pursue life’s opportunities. A love for children therefore drives all of us to identify the best solutions for their health, no matter how challenging this might be. In line with these ideals, the United States invests more per capita on the health of children than its peer countries.^2,3 Despite these investments, the United States has failed to provide all children with needed and good quality health care, and its children have had poorer health outcomes than other industrialized nations.4, 5, 6

The United States spends more on health care than any other Organization for Economic Co-operation and Development (OECD) country, both as a proportion of its gross national product and per person. In 2020 the figure was $11,945 per person, nearly twice as much as the average in other industrialized affluent countries where the amount spent on health per person averaged about $5736.² This is also true of the investment in child health. In 2018 the federal government spent about $6200 per child younger than 19, again considerably more than peer countries.³ Yet, despite this level of health care spending, American children suffer much worse health outcomes than in other industrialized countries.^5,6

A study of mortality trends from 1961 to 2010 for children from birth to 19 years of age for the United States and nineteen comparator countries found that while the United States outspent all other countries on child health during that period, the risk of death in the United States was 76 percent greater for infants and 57 percent greater for children than in the other countries. This trend held across almost every category. According to this study, the inadequate United States performance resulted in over 600,000 excess deaths during this period.⁴

Another source, a 2013 United Nations Children's Fund (UNICEF) report, ranked the United States as the twenty-fifth worse of twenty-nine developed countries in its record on overall child health and safety.⁵ More recently a 2020 World Health Organization (WHO)-UNICEF-Lancet Commission on a future for the world’s children ranked the United States 39th out of 77 upper and middle-income countries in providing for the flourishing, surviving, and thriving of children.⁶

As with other health data, there are significant ethnic, racial, and income disparities in children’s health data when it comes to insurance coverage and health outcomes in the United States. From 2016 to 2018 national cross-sectional data show increases in children’s enrolment in Medicaid and other government-aided health care but children’s enrolment in the employer-based health insurance programs that often provide better benefits decreased. Moreover, minority background children were more likely to be uninsured and to experience inadequate access to health care and services. Even after the establishment of the Affordable Care Act (ACA), children from minority backgrounds in the United States have continued to face challenges and disadvantages when compared with the majority white children. Some of the families in disadvantaged groups may not even be aware of their children’s eligibility for the ACA or its related Children’s Health Insurance Program (CHIP).⁷

Research based on data from 2011 to 2012 also found an inverse relationship between income and poor health status when considering health conditions among the children enrolled in public health insurance.⁸ This relationship was particularly strong for mental health disorders. Differences between the children from families with the lowest income and those in families with higher incomes outside the range in this study are likely to be even greater. Although the significant relationship between income and health among children with public health insurance parallels research in other countries with universal public health insurance such as Canada, the United Kingdom, France, and Germany, the relationship between income and health was greater in the United States. This is not to discount the importance of CHIP in improving the health of children.⁸

Currently the United States position on children’s health is an anomaly in another regard. The United States is the only United Nations member country that has not adopted a national framework for securing the rights and well-being of all children through the ratification of the Convention on the Rights of the Child (CRC).⁹ The 1989 CRC is one of the nine core international human rights treaties whose provisions are binding on the countries which have ratified them. Even though representatives of both the Reagan and George H.W. Bush administrations played a role in the drafting of the CRC, the historical reluctance of the United States to ratify international human rights conventions because doing so might impinge on its sovereignty makes it unlikely that this country will ratify the CRC in the near future.¹⁰ Some have also been concerned that CRC ratification might give children certain rights to participate in medical decision-making that would infringe on the rights of their parents. However, the CRC conceptualizes these rights as more of a three-way partnership among physicians, parents, and the child-patient. Nevertheless, even in the absence of ratification of the CRC it is possible and important to adopt a child rights approach to public policy and to support the principles and norms the CRC embodies.

The authors of this Personal View believe that to improve children’s health and welfare it is essential that child health professionals and their professional organizations promote the child rights framework enumerated in the CRC, particularly its provisions on health care, to promote the health and well-being of all children. It could be possible to do so without a major increase in funds by reorienting health investments away from some of the expensive curative services benefiting a few patients to other types of investments benefiting more children that could improve health outcomes as well as promote human rights. The remainder of this paper will explain why we believe this to be the case.

The convention on the rights of the child

To protect and promote children’s rights, the United Nations General Assembly adopted the CRC in 1989,¹¹ which quickly became the most widely ratified international human rights instrument to date. Some of the rights enumerated in the CRC reflect the principles and norms common to other human rights instruments: that human rights apply to all children without distinctions and without discrimination and in all settings; that these rights include both civil and political rights and economic and social rights; that rights impose obligations on both individuals and on the state to respect them and fulfill their requirements; and that there should be accountability for violations and non-fulfilment of these rights. Like other human rights instruments, the CRC affirms that its subject, here the child with the capability to do so, has the right to express his/her views freely and that the child has the right to freedom of thought, conscience, and religion. Other relevant stipulations in the CRC include the importance of growing up in a family environment of happiness, love, and understanding; the primary consideration that should be given to the best interests of the child; the obligation of the government to support children to develop to their full potential; and the requirement that the government assist the family when it is needed to provide the child with a standard of living necessary for the child’s physical, mental, spiritual, moral and social needs.

Importantly, Article 24 of the CRC establishes the right of the child to the “enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and for the rehabilitation of health.” The provisions of Article 24 vest state parties, which are the countries that have ratified the CRC, with the responsibility to pursue full implementation of this right, at least to do so gradually. This provision enumerates the obligation to diminish infant and child mortality; to ensure the provision of needed medical assistance and health care to the child with an emphasis on primary health care; to combat disease and malnutrition; and to ensure that all segments of society, particularly parents, have access to the necessary education and information for basic knowledge of child health and nutrition. In many high-income countries, universal pediatric primary care has been the core of health care services to children that has enabled them to consistently achieve good outcomes. Importantly, the CRC does not specify that children’s health care be directly provided by the government or incorporated into a single payer system, just that the government ensures that all children have the right means of access to such services whether by a public, private or mixed provider.

The United Nations Committee on the Rights of the Child, which oversees the implementation of the CRC by the states parties that have ratified it, issued a General Comment in 2013 that elaborates on the provisions of Article 24 on children’s right to health in order to provide further guidance and support to state parties and others working in the fields of children’s rights and public health.¹² General Comment No. 15 interprets children’s right to health as defined in Article 24 as an inclusive right encompassing both physical and mental health. According to the General Comment, the right to health not only includes timely and appropriate health services but also a right to programs that address the underlying (social) determinants of health. It explains that children’s health is affected by many things in addition to the availability of health care, including cultural practices and the availability of socioeconomic resources and benefits such as nutritious food, clean water, and a healthy environment, and beyond that, the development of new medical technologies and vaccines, and the consideration for the effects of climate change.

The General Comment also discusses the need to address mental health, particularly for adolescents. This is a particularly relevant provision. Studies have documented the high prevalence of mental health problems among American children and adolescents even before the pandemic and increasingly so as a consequence of the isolation, fear, and anxiety inflicted on youths during the COVID-19 pandemic.¹³ However, the mental health services currently available cannot meet the demand. According to recent data, there are only 14 child and adolescent psychiatrists for every 100,000 children in the US, and few of them practice in rural and underserved areas.¹⁴ This problem will require developing and scaling-up innovative solutions to begin to address the youth mental health crisis as a matter of priority such as more pediatric medical practices offering mental and physical health care and more mental health counselors being trained and posted to schools and health clinics. Hopefully, an attention to the principles enumerated in the CRC could provide an incentive to do so.

Benefits to children's health of adopting a human rights approach to pediatric healthcare

There are several important benefits to children of adopting a human rights-based approach to their health. A human rights approach would provide an enlightened and child-supportive standard for evaluating child-related policies. It would highlight issues related to children’s health and welfare in formulating policy considerations, and likely introduce improved intentionality.¹⁵ It could bring attention to problems such as children’s mental health as well as additional incentives and greater urgency to addressing them.

At the most fundamental level, the adoption of a human rights-based approach would bring a commitment to achieving universal healthcare for children enabling all children to have access to essential care that is affordable and of good quality, at the very least the equivalent of primary care. Improving access to good quality and affordable healthcare would put disadvantaged children on a more level health playing field. This is particularly relevant in a country where there are such deep income, racial, and ethnic inequalities. Universal good quality healthcare would go a long way to improving children’s health status and well-being as well as helping provide a more supportive environment for them.

The appropriate investment of funds and establishment of additional good quality pediatric health facilities could enable more child health professionals to provide preventive as well as curative care services. Preventive care could include efforts to address the social determinants of health. For example, an innovative program recently instituted in primary care waiting rooms in five Connecticut towns has medical students conducting screenings of patients’ social determinants of health and then making the data available to physicians for their care.¹⁶ Similar innovative programs in pediatric settings reflecting the inclusive vision of health in the CRC could be instituted more widely.

A human rights-based approach changes the view of children from solely being passive subjects of adult protection to also being subjects of rights with entitlements to having their needs met and their best interests protected. In the process, it vests children with a voice to state their opinions and preferences and a right to be consulted and, when sufficiently mature, to participate in the decisions that impact their health and wellbeing. In other words, within a human rights framework, children are not objects but become subjects with rights and entitlements. This shift requires health providers and parents to identify effective means of engaging with children and adolescents according to their specific developmental stages. It means that those caring for them should integrate their feedback throughout the design, development, implementation, and evaluation of the changes and initiatives that are being considered. Making positive changes to children’s health requires input from all stakeholders; these become shared responsibilities. Pediatric practice in some states already provides older children with the opportunity, albeit not the right, to express their views and in some situations to make decisions about their care.^17,18 This is the basis of the mature minor doctrine. A rights-based approach would extend these opportunities more widely and at least encourage physicians to consult children with the capacity to understand and possibly seek their assent.

Human rights-based approaches would also infuse a more comprehensive outlook to children’s health, bringing greater balance between the emphasis placed on physical and mental health. The right to health is a right to achieving the highest attainable standard of both physical and mental health. As noted above, the COVID-19 pandemic with its significant impact on children’s and adolescent’s mental well-being has been a stark reminder of the centrality of mental health care for the well-being of children and their families.¹³ In 2021 several pediatric health organizations, including the American Academy of Pediatrics (AAP), declared a state of emergency regarding the increased mental health problems among youths due to the COVID-19 pandemic.¹⁹ Pooled estimates obtained during the first year of the COVID-19 pandemic suggest that one in four youth are experiencing depression symptoms and one in five anxiety symptoms.²⁰ Another study found that youth emergency department visits had doubled, and among children experiencing suicidal symptoms had increased five-fold between 2011 and 2020.²¹ A human rights approach would provide greater incentives to address the ongoing youth mental health crisis.

A focus on human rights hopefully would also bring greater attention and commitment to providing the basic social, economic, environmental resources, policies, and conditions that shape health, usually referred to as the social determinants of health. As an article commemorating the thirtieth anniversary of the CRC noted, “Since the launch of the CRC, it has become clear that the root causes of child health and well-being are primarily defined by social and environmental determinants.”²² All too often medical professionals focus their research and intervention on risk factors that are relatively proximal causes of disease such as diet, exercise, or infectious agents, but fail to analyze the root causes of disease. As Link and Phelan suggested in their 1995 seminal report, “individually-based risk factors must be contextualized by examining what puts people at risk of risks” and ”social factors such as socioeconomic status and social support are likely fundamental causes of disease that, because they embody access to important resources, affect multiple disease outcomes through multiple mechanisms and, consequently, maintain an association with disease even when intervening mechanisms change.”²³ Social conditions also play a major role in determining health inequalities.²⁴

Better access to good quality education and housing as well as clean water and air and healthy foods would likely improve health outcomes and often for a considerably smaller investment than the current emphasis on high-cost curative health interventions. For example, the United States has a high rate of premature and low birthweight infants, higher than other industrialized countries, often requiring expensive neonatal intensive care. Extremely premature infants utilize enormous resources,²⁵ and hospital expenses typically exceed $600,000 for each survivor.²⁶ While survival rates have increased, most extremely premature infants either die in the neonatal intensive care unit or have significant long-term neurodevelopmental and chronic health problems including breathing issues and intestinal problems.27, 28, 29 As a result, the United States Centers for Disease Control and Prevention (CDC) has identified reducing the incidence of preterm births as a national health priority.³⁰

Greater attention to the underlying social determinants of health for pregnant women such as the availability of nutritious food, placement in a healthier environment, safer working conditions, and reductions in exposure to racism, could result in healthier outcomes for both pregnant women and their babies and possibly at a lower cost compared to the neonatal intensive care many premature babies require. Recent data suggest that maternal vulnerability to adverse health outcomes is associated with preterm birth,³¹ and that maternal socioeconomic status plays a role on hospital outcomes of extremely premature infants.³² Neighborhood living conditions also appear to influence health outcomes. Women who move from a low-income to a higher-income neighborhood between births experience less morbidity and death, as do their newborns.³³ These findings may have important research and policy implications for the improvement of children’s health and wellbeing in the United States.

The training of health professionals

Pediatric healthcare professionals can play a leadership role in leveraging human rights to advance children’s health and well-being, but to do so they must be educated about human rights. The 2019 Lancet Commission on Legal Determinants of Health suggested that “both health graduates and law graduates should be introduced to the basics of international human rights law.”³⁴ This recognition is rooted in the principles outlined by Susannah Sirkin and colleagues at the nonprofit organization Physicians for Human Rights that “those who take on the ethical oath to protect and promote human life and health have a unique obligation and contribution to make to human rights.”³⁵ Unfortunately, only about 2% of medical schools provide formal education in human rights.³⁶ Reaching the individual student encourages the realization that human rights are not something which we can simply rely upon within large institutions, or governments to support and enforce. As Eleanor Roosevelt reminded us: “Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world … Unless these rights have meaning there, they have little meaning anywhere.”³⁷ Engaging healthcare professionals both in medical school through a new human rights oriented curriculum and through continuing education would be an important step towards advancing a culture of human rights in health and to ensure ongoing expertise as knowledge evolves over time. It would also be beneficial for pediatric professional organizations to provide greater coverage of human rights issues at their professional meetings.

The role of pediatric healthcare professionals

We also recommend that healthcare professionals engage in advocacy toward the goal of promoting child human rights-oriented public policies, particularly to promote the implementation of universal good quality and affordable medical care for children and adolescents. The Centers for Medicare and Medicaid Services recently approved continuous eligibility of children for Medicaid up to age six to prevent gaps in coverage during early formative years.³⁸ Using Section 1115 Demonstration authority, Oregon plans to provide continuous Medicaid coverage to children from birth through age five and for two years for all Oregonians enrolled in Medicaid ages six and up.³⁹ Washington, California, and New Mexico are in various stages of applying for Section 1115 waivers to similarly cover children from birth until school age. Other states are, however, moving in the opposite direction. Given these challenges, we argue that pediatricians and other healthcare professionals have a moral duty rooted in their professional responsibilities to find ways to move the needle forward in the direction of improved access and affordability of good quality health care for all children.

Although the United States government has not ratified the CRC, the AAP early endorsed the CRC and supported its ratification.⁴⁰ A 2010 policy statement of the AAP Council on Community Pediatrics and Committee on Native American Child Health, “Health Equity and Children’s Rights,” lauds the CRC as a foundational document for future policy implementation, noting that “the promotion and protection of children’s rights can be used to guide the work of pediatricians as clinicians and child advocates.”⁴¹ We affirm the view of these documents and once again recommend that health professionals, particularly those caring for children, promote the norms and policies in the CRC. At some time in the future, if the policy environment in the United States changes, it may also become more feasible for pediatric healthcare professionals to advocate for the ratification of the CRC by highlighting the benefits of doing so.

Conclusion

An article published recently in JAMA Pediatrics stated that the United States faces a pivotal moment of opportunity and risk regarding issues affecting children.⁹ We agree. And we also agree with its assessment that a human rights approach can provide a powerful tool to support a developmental ecosystem conducive to children thriving.⁹ For that to happen, however, child health professionals, particularly pediatricians, will need to take a leadership role to advance children’s rights and the adoption of public policies congruent with children’s health rights and well-being. The fact that countries that invest less in healthcare than the United States have achieved better health outcomes provides the certainty that a solution is possible and within reach.

Contributors

AC conceptualized and designed the potential contributions of a children's right to health approach and drafted the initial manuscript.

LB conceptualized and designed the study, contributed to the initial drafting of the manuscript, and critically reviewed and revised the manuscript.

JK and LF assisted in conceptualizing the manuscript, reviewed the first draft and references, and helped formulate the final version.

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Declaration of interests

The authors have no conflicts of interest to disclose.