Q&A: Sara Rosenbaum, JD
As a policymaker, professor, scholar and writer, Sara Rosenbaum has devoted her career to promoting health policies to improve the lives of low-income, minority and medically underserved populations. Known for her work on a range of legal and policy issues including the expansion of Medicaid, the expansion of community health centers, patients’ rights in managed care, civil rights and healthcare and national health reform, Professor Rosenbaum is the Founding Chair of the Department of Health Policy and Harold and Jane Hirsh Professor of Health Law and Policy at George Washington University School of Public Health and Health Services. She also holds appointments in both the Schools of Law and Medicine and Health Sciences.
As a member of the White House Domestic Policy Council under President Clinton, she directed the drafting of the Health Security Act and oversaw the development of the Vaccines for Children program, which offers near-universal coverage of vaccines for low income and medically underserved children. Named one of the country’s 500 most influential policymakers, Professor Rosenbaum regularly advises state governments on health policy matters and has testified as an expert in legal actions involving the rights of children under Medicaid. Among other honors, she is a recipient of the Investigator Award in Health Policy from the Robert Wood Johnson Foundation, is a member of the Institute of Medicine and has been recognized by the Department of Health and Human Services for distinguished national service on behalf of Medicaid beneficiaries. Professor Rosenbaum serves on governmental advisory committees, private organizational and foundation boards and is a past Chair of AcademyHealth, a leading professional society for health services researchers.
Professor Rosenbaum recently spoke with FAIR Health Access about her career in healthcare policy and how the Affordable Care Act will continue to change the healthcare landscape.
BA: A focus of your health policy work has been the intersection of civil rights and healthcare. How does Title VI of the Civil Rights Act of 1964 relate to healthcare access and quality? To what extent was the passage of the Affordable Care Act (ACA) in 2010 a civil rights victory?
SR: Title VI of the 1964 Civil Rights Act came along at a time when the healthcare system ranked with education as among the most pressing targets of desegregation. From the time it was enacted, for example, Title VI included healthcare as a major focus, something that is not well-remembered. Dr. Martin Luther King, Jr. observed a long, long time ago that segregation in healthcare was potentially the most serious of all forms of segregation because it involved life itself. During the debates over the Act, healthcare was specifically discussed, and the Act’s original implementing regulations gave specific examples of prohibited discrimination that included hospitals’ decisions to relocate into communities inaccessible to minority populations. Discrimination based on race, ethnicity and national origin has been a terrible fact of life in healthcare for decades. Today, luckily, progress has been made, although given how deeply intertwined race and poverty are, the healthcare system continues to experience a vast amount of de facto discrimination because of the extreme difficulties poor and uninsured people face in gaining access to quality healthcare.
Those who specialize in civil rights have been extremely active around passage and implementation of the ACA because it is self-evident that gains for low-income Americans are, in effect, gains for minority Americans in the US. The ACA of course makes a seminal contribution to the problem. The Kaiser Family Foundation just published a study showing the disproportionately large impact of the Act on minority Americans, who are much more likely to be uninsured. To the extent that a central purpose of the Act is to create more equal access, its benefits for minority Americans should be seen as a one of the greatest civil rights achievements of our time.
BA: You directed the drafting of the Health Security Act in 1993 under former President Bill Clinton. Though the Act did not ultimately pass, how did it set the stage for the development and passage of the ACA in 2010?
SR: One of the most talked-about aspects of the failure of health reform in 1994 was the notion that the last thing a White House should do in health reform is to deliver a fully formed piece of legislation and then attempt to manage the legislative process from within the White House. The ACA developed much more organically and rested on leadership from Members of Congress. Of course, the White House was criticized for not being sufficiently engaged. But its decision to pull back and allow the ACA to evolve on Capitol Hill, and in accordance with Capitol Hill timing, was very much a reaction to the experience of health reform in the Clinton Administration, which had sent a bill fully formed to Capitol Hill and then said, “now pass this.” Another key difference is the extent to which President Clinton’s bill attempted to introduce structure into how healthcare itself is organized and delivered, by emphasizing the development of fully integrated delivery systems. The ACA is much more about financing reforms, with incentives to the healthcare system to move in the direction of greater clinical and financial integration, but not with the same kind of highly regulatory intervention as President Clinton’s bill.
BA: After the ACA is implemented, what challenges will remain with respect to ensuring access to care and coverage, especially for low-income and medically underserved populations?
SR: The big challenge is going to be healthcare capacity in these communities. We did a study a few years ago showing that, not surprisingly, the ACA would have its biggest impact in terms of coverage on communities that already have been designated as medically underserved. For that reason, the expansion of community health centers and the investment in the National Health Service Corps became terribly important features of the Act because they represent a commitment to build capacity in underserved communities, with investments coming ahead of the January 2014 implementation date for the coverage expansions
BA: As implementation of the ACA moves ahead, what course corrections or adjustments may we observe? What issues may emerge as ACA reforms are implemented?
SR: When major legislation is passed there are always errors, omissions and provisions of the law that have to be tweaked and corrected. Other pieces of the law may require more significant reforms once they begin to gain real-world implementation experience. As I see it, there are several big problems which, in a different world, we would have addressed already through follow-on legislation. The first is the lack of sufficient funding to implement the Act. It’s a very costly Act to implement because in my experience, interventions to regulate a complicated marketplace and make it operate more efficiently and fairly are always far more complicated than laws that involve setting up a new program. Just getting the money to run this program has been a big problem. For example, the Bush Administration was given three times the money to implement Medicare Part D – a single benefit expansion for one small segment of the population.
The other absolutely crucial issue, which we won’t begin to see the effects of until people start enrolling, is the modest nature of the premium subsidies, which in turn may discourage many eligible people from enrolling. If the subsidies prove to be inadequate, the Act will fail to attract the young healthy covered lives that the new marketplaces need in order to function well.
So my biggest fear – and a lot of people’s biggest fear – is that the subsidies are insufficient to attract the large number of younger, healthier people who are needed to make the system work. Older, sicker people will get much needed premium subsidies, but without younger populations, the cost of coverage will be far higher and health plans offered in the new Marketplaces will struggle to survive.
The biggest long term issue, which spills over into what FAIR Health is all about in some ways, is that in order to make a regulated market work, health insurance is going to have to be affordable. In order to this work, insurance is going to have to be much less expensive. In order for insurance to be affordable, we are going to have to figure out how to control not only the cost of coverage, but the underlying cost of healthcare. Controlling those costs becomes an absolutely crucial element of health reform.
BA: To what extent will the introduction of the public insurance exchanges broaden the scope of consumers’ roles in their healthcare coverage and decisions? What can we expect to observe as consumers select health plans this fall, particularly those consumers making these selections for the first time?
SR: It’s going to be a long, evolutionary process. We will need lots of resources to assist consumers with how to enroll in health insurance, how to pick a plan, how to secure the subsidy coverage and how to make use of their coverage. These are all decisions and processes that are not simple, especially for people who have lived most of their lives without health insurance. Those of us who have grown up with insurance don’t really appreciate how new an experience this will be for those who have not had coverage or ever chosen a health plan. I frequently describe the odyssey of moving toward health reform as moving toward a “new normal” in which being insured for healthcare costs becomes as routine a fact of life as having auto insurance. What will it take for the US to get to the point of experiencing the new normal in which everybody has health insurance just like everyone has automobile insurance? It is a known fact that, if you drive, you must have insurance. If you want to be able to afford your healthcare, and get the right healthcare, you need to have health insurance. It will take the country a while to get to the new normal, a place we quickly arrived at for the elderly when Medicare was enacted. This will be a much longer haul.
We will also need to get people accustomed to using healthcare in ways that are different from how many of us relate to the healthcare system today. Too many Americans don’t have a regular source of healthcare, lack effective means for securing preventive care or care management for chronic illnesses, and receive care sporadically, in the wrong place and at the wrong time. The ACA will help to remove the financial barrier to accessing healthcare. In doing so, the law will enable people to develop a good relationship with the healthcare system, a relationship that many previously may not have had the opportunity to secure.
BA: FAIR Health has been at the forefront of bringing cost transparency to the market. How will cost transparency give rise to new areas of research that advance understanding of potential solutions for controlling healthcare costs?
SR: The door that FAIR Health opens with its data -- and of course the increasing scrutiny healthcare prices are receiving through Steven Brill’s recent article in Time and the recent decision of the Centers for Medicare and Medicaid Services to put hospital pricing data online -- opens up vast questions of all kinds: why do these enormous and inexplicable pricing differentials exist? What should people pay for certain services? How do we control these prices?
In figuring this out, there are really two issues. What should healthcare providers charge for their services, and what should people pay? If you want to go shopping for a new sweater, you can wait until the 40% sale to start, and you know that you will find great buys. Unfortunately, so much healthcare is discretionary; you can’t simply wait around until gallbladder surgery goes on sale. The central question of our time is what how to properly construct paying for healthcare. Once we are able to answer this question, we can begin to get spending under control and open up the healthcare system in the ways envisioned by the Affordable Care Act.
This interview appeared in the May 2013 issue of FAIR Health Access.