Editor’s Note: This National Health Law Program blog post was first published as a series of posts by Executive Director Elizabeth G. Taylor, but have been combined and re-published as one long-form blog post. The post delves into National Health Law Program achievements, and its challenges as it continues its 50-year fight to make health care a reality for low-income people and underserved communities.
On behalf of the National Health Law Program, which turns 50 this year, I offer these birthday reflections on our 50-year fight to ensure that low-income people have access to quality health care and the opportunity to achieve their full health potential.
The National Health Law Program was born in 1969, a period of national tumult. The year capped a decade that brought out the best and worst of us – brilliance and courage in the fight for civil rights and hatred and fear of the change those rights would bring. There were many reasons to be discouraged about where our country was headed. A year earlier, two beacons of hope, Dr. Martin Luther King, Jr. and Robert F. Kennedy, were killed, adding their names to a long and gruesome tally in the fight for equality and justice. But four years earlier, in 1965, Congress passed the Social Security Act and, with it, the Medicaid program, offering the nation’s long overdue commitment to provide health care for its neediest. It was into this mix of idealism, despair, and, finally, a concrete commitment to provide for the nation’s poorest, that the National Health Law Program was born. Now, 50 years later, it is appropriate to look at where we have been and where we must go.
To a large and sobering extent, the battles we are waging to ensure that low-income people have access to health have not changed since 1969. Although the Affordable Care Act was a major step forward, we have not, as a country, recognized what the rest of the world understands, that health care is so essential to the ability to live a happy and productive life that it must be treated as a fundamental human right. Compounding that limited vision, our country’s shameful history of slavery, Jim Crow, and continuing racism has haunted our efforts and will doom them unless we confront racism head on. Finally, the gap between the rich and the poor – or rather between the very rich and everyone else – profoundly impacts health. Income is a primary predictor of a person’s health. The fact that the power to address that disparity rests with people whose privilege insulates them from the struggles faced by the rest of the people in the country means that policymakers will continue to sacrifice the health of many for the economic success of the few. Lest those obstacles sound overwhelming, there is reason for optimism and there are things we can all do to advance the cause. First, the obstacles.
Our national aversion to health care for all.
In most of the world, health care is a celebrated fundamental human right and governments accept responsibility for ensuring that right. Not so in the United States. The Universal Declaration of Human Rights, adopted by the then-very-new United Nations in 1948, includes the declaration that “everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care …” Led by Eleanor Roosevelt, the U.S. voted in favor of the Universal Declaration, but it also considers it non-binding – our nation is not bound to follow it. Similarly, the U.S. has declined to ratify the International Covenant on Economic, Social and Cultural Rights. The state parties to the Covenant recognize the right of all people to the enjoyment of the highest attainable standard of physical and mental health, and commit to take steps that include “The creation of conditions to assure to all medical service and medical attention in the event of sickness.” No other country that claims to be a world leader has declined to ratify the Covenant.
For at least the last century, visionary U.S. leaders have pushed unsuccessfully for health care for all. Daniel Dawes, in his book 150 years of Obamacare, chronicles how generations of presidents have fought to expand health rights in the U.S., including Theodore Roosevelt, Franklin Delano Roosevelt, and Harry Truman. While advocates notched small victories in the first half of the last century, meaningful expansion of health rights was hampered by moneyed interests and the specter of socialized medicine.
The passage of Medicaid and Medicare in 1965 was a significant step forward, but it’s initial impact limited. Only so-called deserving or needy individuals – people with disabilities, seniors, and children – were entitled to health care through Medicare and Medicaid. Thanks to the leadership of U.S. Congressman Henry Waxman and other activists, Congress expanded the reach of Medicaid several times since 1969, but, before 2009, there was no federal program that promised health care to all. Specifically, many low-income adults were left without access to a regular source of health care.
The Affordable Care Act (ACA) was a bold commitment to health care for everyone (except undocumented immigrants, and some other lawfully present immigrants, such as those individuals enrolled in Deferred Action for Childhood Arrivals or DACA), which built on the private market system for most people above the federal poverty line (until Medicare kicks in), and built on Medicaid to cover everyone below the federal poverty line. While not perfect, the ACA is successful. Between 2010 and 2016, 20 million people gained access to health care because of the ACA. Despite the Trump administration’s effort to sabotage the program, enrollment in plans offered on the health care exchange has stayed strong and premiums have actually gone down in many states. Yet there are still states not taking advantage of the expanded federal funding for Medicaid coverage of low-income adults, still lawsuits seeking to declare the ACA unconstitutional and still periodic rumblings in Congress about repealing the ACA.
Much of the current work of the National Health Law Program and many others is holding on to what we have – fighting repeated partisan efforts to kill the ACA, to cut funding for Medicaid, or to add obstacles to Medicaid enrollment that serve no purpose other than to knock people off of state Medicaid rolls. For example, under a partisan plan launched in Kentucky in 2017, the state acknowledges that about 100,000 people will lose health care if the plan is implemented. Shockingly, state and the Trump administration tout the plan as good for the people of Kentucky. Luckily, for those 100,000 Kentuckians, we have taken Trump to court over this violation and Medicaid beneficiaries continue to receive benefits. The situation is even worse in Arkansas, where 17,000 people have already lost health care under the state’s new plan. We are challenging that plan in court too, but court challenges have done little to reduce the Trump administration’s appetite for rollbacks. As a nation, we still do not understand that health care for everyone strengthens our country. A two-tiered health system that caters to the rich and those with “the right kind of jobs” leaves us weaker (and sicker) as a people.
Our legacy of racism
We continue to suffer from the consequences of our history of slavery, racism, and discrimination. In 1966, the head of the Medical Committee for Human Rights (MCHR) said, “There is scarcely a hospital North or South that does not overtly or covertly discriminate against Negroes.” Addressing the MCHR’s annual meeting, Dr. Martin Luther King declared, “Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death.” It was not just discrimination against patients but also discrimination against doctors and other health care professionals of color seeking admission to medical societies and the privileges to practice. This discrimination robbed communities of color of generations of culturally competent physicians and nurses, and left us poorer as a nation, never knowing what breakthroughs and cures might have been discovered by generations of bright, young people denied access to the field of medicine.
Since 1969, the National Health Law Program has fought against discrimination in the provision of health care services, both overt and implicit. An early executive director of the National Health Law Program was passionate about fighting discrimination in access to health care from experiences representing people of color who were refused admission to southern hospitals, one of whom died from his gunshot wound. We sued to enforce the Hill Burton Act, which requires that hospitals receiving certain federal funds must provide free or below cost services to low-income people, regardless of race.
We have also pushed for the tools and data needed to understand health disparities and better address them. For years, federal agencies only collected data on “white,” “black,” or “other.” We have fought to guarantee that federal agencies collect data that represent the reality of race in the U.S. We continue these fights today as without having accurate and comprehensive data, we cannot identify and address disparities. We also fight to ensure that medical forms, other important health care documents, and oral communications can be accessed by anyone, regardless of English proficiency.
We work on behalf of people with disabilities, to battle discrimination and ensure that they have the support they need to live in the most integrated setting possible.
We fight against laws and practices that coerce low-income women, most often immigrants and other women of color, into agreeing to sterilization immediately after delivery of a baby as a “public health” measure.
Many of us fervently hoped that as a nation, we had at least moved beyond overt discrimination based on race, but the past few years are opening our eyes to that delusion. Take for example the administration’s recently proposed “public charge” regulation, which would severely punish lawfully present immigrants who use the health care they are legally entitled to under Medicaid and CHIP. The proposed changes do not further public health or well-being; the goal is to intimidate minority and immigrant communities. (The National Health Law Program and our partners are fighting back on this too). Additionally, new and proposed regulations allow, and even encourage, discrimination against LGBTQ individuals and women in health care settings. The health and well-being of these groups have been historically sacrificed for political gain, and the deadly impacts are felt most keenly by women of color and queer people of color.
Racism also takes its toll in less obvious but no less certain ways. People of color have poorer health outcomes than white people in our country. Some of that stems from the economic vestiges of racism – people of color on the whole make less money, are more likely to be imprisoned, and live in segregated neighborhoods where, for many years they were unable to build equity in homes they owned or benefit from tax breaks related to home ownership – but racial disparities in health cross economic lines. Even high-income people of color with access to great health care, have poorer health outcomes. There is no medical reason why people of different racial backgrounds should have different health outcomes, but for years, the medical community blamed race for health disparities. We are at last naming a significant culprit – racism, not race is the cause of poor health outcomes. Mounting evidence reveals that people of color in our country live with the constant stress of racism and that stress causes a plethora of negative health outcomes.
Finally, the stark and vast income inequality we created, and perpetuate through economic policy decisions, like the 2017 tax cuts for wealthy corporations, is also making us sick. We all know now that the health individuals can expect to enjoy is directly impacted by where they live, how much money they make, where they work, and where they go to school, in addition to whether they have access to good health care services. People in poverty have greater health challenges than people with high incomes.
Children born into low-income families start off with a weight that drags them down when they start school: their brain development is impacted by the multiple traumas associated with growing up in low-income families and dangerous neighborhoods. In addition, parents who are battling depression, substance abuse, economic pressures, trying to keep their children safe in dangerous communities, have fewer resources left to provide stimulation to their young children.
The likelihood that someone born into a low-income family will break out of the cycle of poverty is akin to that family winning the lottery. We know that and we do very little about it. Instead, we do the same thing – continue economic policy that favors the rich and expects the poor to dig themselves out – and we do not really expect a different outcome.
Given the obstacles, is the vision of a country where everyone has the opportunity to achieve their health potential a pipe dream? We do not think so.
Promising things are happening and there is work for all of us to do. For starters, we are having a national conversation about health care. Voters went to the polls in November because they want to keep or get health care coverage. When reporters write about provisions of the Medicaid statute, their readers understand what they are talking about. Everyday people are starting to realize that what happens in Washington impacts their health care at home.
Members of Congress are discussing bills that would provide universal health care and address some of the challenges still facing implementation of the ACA. (We are optimistic about those discussions, though we want to make sure that the particular health needs of low-income people are addressed in any ultimate plan by including appropriate services. This includes Medicaid’s coverage for children, which is often more comprehensive than that available in private insurance.) The fact that we are talking seriously about universal health care means that more people are thinking about health care as fundamental to our country’s future and that is huge, even though we are currently battling partisan efforts that would take us in the opposite direction.
It is also promising that much attention is being paid to the health care and other support that children growing up in stress need to have a real chance to succeed. “Trauma-informed” educational policies are increasingly common. The National Health Law Program leads work to implement and enforce Medicaid’s comprehensive coverage for children and youth. We work with the Healthy Schools Campaign to help school systems connect schoolchildren with the health care services they need, including the broad range of services guaranteed to children in the Medicaid statute. We are also holding states across the country accountable to provide, through Medicaid, comprehensive behavioral health services to children and adolescents who need them. There is much more to be done, of course, but many voices are naming the obstacles confronting low-income children and identifying strategies to address them, including taking advantage of the resources currently available through Medicaid.
Reproductive health remains under constant threat, but states are stepping up, especially because of the current administration’s non-stop efforts to demonize reproductive health care and block access to quality care. Using the National Health Law Program’s model Contraceptive Equity Act as a blueprint, 11 states have enacted contraceptive equity statutes, state laws that guarantee women access to the full range of contraceptive health services. We continue work to expand our success and in 2019 believe that even more states will take up legislation to guarantee access to contraception.
We also believe that abortion must be safe, legal, and accessible to low income women and we are working against policies that restrict that access.
We are optimistic that we can make progress in addressing health disparities. Until our country’s leaders are ready to address the economic inequality that is so intertwined with racism in perpetuating health disparities, we will not fully address the problem, but naming racism rather than race as the source of health disparities is an important step. Understanding that no medical reason exists why people of color should be less healthy than their white counterparts takes away an excuse and means that we have an obligation to do something. Promising ideas abound, like using Medicaid funds to cover doula care, because doulas help women manage the stress of pregnancy and childbirth and stress is a killer. In addition, in 2018, forward-thinking members of both houses of Congress introduced the Health Equity and Accountability Act to address and eliminate health care disparities experienced by communities of color and other underserved communities
Where does this leave us, as an organization turning 50?
We are national experts in the laws and policies that determine whether and how low-income people have access to quality health care and a leader in enforcing health and non-discrimination rights, in policy arenas and in court. We have played an important role in making the promises of the Medicaid statute, the Americans with Disabilities Act, and other civil rights laws realities for low-income people, both through our direct advocacy and by serving as a resource to advocates in all 50 states and D.C. Should we continue to be and do what we have been and done for the last 50 years?
There is no doubt that we are needed in the current fights to protect health care against an administration bent on sabotage. We bring the knowledge and litigation expertise to lead this defense. And what about the future, when the current dangers do not exist and we get back to the business of working to ensure everyone a chance to achieve their health potential? What will our role be then?
We have spent some time thinking about these questions and they are ones that everyone who cares about health should be asking. What is our role going forward? What is your role? What can you do?
For the National Health Law Program, while we wish for a day when we would not be needed to protect access to health care, we doubt that that day will come soon. So we will continue to pursue our passion – ensuring access to quality health care for low-income individuals. And we will continue doing what we are extraordinarily good at – understanding the details, translating them for policymakers, and enforcing them in court. But we are still learning and growing and we will do more. We will continue to learn about how inequality and racism affect health so that we see and help others see and address those issues. While continuing to be the organization that digs deep into the weeds of health law and policy, we will also continue to collaborate with individuals and groups that bring different perspectives and expertise so that together, we magnify our impact.
I commend this approach to anyone interested in being involved in our country’s health. Find your passion and pursue it; look for ways to contribute your skills and resources to the effort and for ways to magnify your impact through collaborations. And support organizations like the National Health Law Program that are on the front lines of the fight!
Happy Birthday National Health Law Program!