A Health Disparity Action Plan: Achieving Equity through Clinical Trials, Affordable Care, and Professional Development

1 A Health Disparity Action Plan: Achieving Equity through Clinical Trials, Affordable Care, and Professional Development Schafer, et al. Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019, pp. 1-8 © 2011 Center for Health Disparities Research School of Community Health Sciences University of Nevada, Las Vegas A Health Disparity Action Plan: Achieving Equity through Clinical Trials, Affordable Care, and Professional Development Daniel Schafer, HealthNovations International Shefa Moten, HealthNovations International Ayesha Khan, HealthNovations International Mauro Ferrari, Office of the President, European Research Council, Brussels, Belgium Boris Lushniak, Uniformed Services University Edwin Burkett, Uniformed Services University Asad Moten, HealthNovations International Corresponding Author: Daniel Schafer, ABSTRACT Given the threatened nature of affordable care in the United States, it is crucial to underscore its importance. What is more, the reason such care is so important is the presence of an oft-unacknowledged disparity in access to quality care in this country and, indeed, around the world. A world without health disparities can be achieved and will be characterized by prompt and quality care available to all and at all stages of the care continuum. Further insurance reform is needed beyond the Affordable Care Act, while local care must be more accessible in rural, urban, and other underserved areas. Clinical trials must also undergo changes to ensure new drugs and treatments will be effective for all populations. Joint efforts between those conducting trials, medical practitioners, the FDA, and potential trial participant, are required for the development of treatment to be more personalized and more effective. A multi-pronged approach can eliminate inadvertent and systemic prejudices in the health field. Keywords: Health Disparity; Clinical Trials; Affordable Care; Public Health INTRODUCTION On March 21, 2010, with eyes trained on a big-screen television at one end of the Roosevelt Room in the White House, President Obama, Vice-President Biden, and a cadre of aides and supporters awaited the final decision on whether the Affordable Care Act (ACA) would be passed into law. It would, of course, be passed, and with the announcement President Obama stood to applaud, a hint of a smile across his face. Others were less reserved. Vice-President Biden beamed. A pair of aides embraced, while another pumped fists into the air. Across the conference table from Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 2 A Health Disparity Action Plan: Achieving Equity through Clinical Trials, Affordable Care, and Professional Development Schafer, et al. the President, Franklin Delano Roosevelt appeared to look down from his portrait on Obama, the older man and the younger wearing the same closed-mouth smile though separated by decades and circumstances. Both knowing—FDR in 1933 and Obama on that day in 2010—that this was only the beginning, and that much work lay ahead. In 2015 the United States government continued to make strides toward guaranteeing equitable and quality healthcare for all Americans with the announcement of the $215 million Precision Medicine Initiative (PMI). The PMI will build on existing efforts to track and study the genes of patients and use genomic data to provide more effective care by creating a knowledgesharing database consisting of, to start, one million patient volunteers from diverse backgrounds (Dzau, 2012 and The White House, 2015). In addition to providing DNA information, these volunteers will provide medical history, lifestyle information, and environmental information that will allow researchers to more quickly develop new treatments, while also assisting practitioners in more effectively treating patients (The White House, 2015). While the ACA and the PMI represent significant steps toward providing the individualized, accessible care each patient needs, challenges remain. In order to achieve true equality in access and quality of care in the United States, a three-pronged approach to solving health disparity must be undertaken to address cost of healthcare, disparity in clinical trial makeup, and inadvertent prejudice on the part of practitioners. This approach consists of: making care affordable, utilizing heterogeneous clinical and drug trials, and building a diverse workforce and empowered communities. Making Care Affordable Prior to the ACA, health insurance laws catered to insurance companies. Those receiving insurance benefits through work were typically shielded from any adverse effects of this, but those who were self-employed or otherwise providing their own coverage lived with the possibility of either being refused insurance or facing steep prices in the event of failing health. In the wake of the ACA, companies face stricter rules surrounding who they must insure, which means coverage will be extended to, at minimum, those who seek an option that is relatively affordable. For four decades leading up to the ACA, the healthcare gap between the rich and the poor became gradually wider. The ACA made significant strides toward a more equitable system for low-income individuals and families by fundamentally changing the way the health insurance business works, which includes efforts to improve quality of care and preventing inflated cost of care for those who otherwise can’t afford it (Starr, 2011). Improvements following the ACA are clear. Indeed, in April 2015 a Gallup Poll found that the uninsured rate in the U.S. is currently the lowest it’s been since the number was recorded beginning in 2008 (Levy, 2015). What is more, the rate has changed most sharply among lower income Americans and people of color— groups that are statistically the most at-risk to be without insurance (United States Census, 2015). Ensuring that care is “affordable” though, provides no guarantee that all Americans will be able to pay for necessary treatment in a time of need, especially for those with pre-existing conditions, who are considered riskier to cover. Indeed, many Americans—particularly those who cannot afford available insurance options—pay exorbitant out of pocket costs, a number that totaled $339.4 billion in 2013 (National Health Expenditures, 2015). While the ACA is the most ambitious effort in recent memory to make healthcare more equitable and widely available, it is also limited and less inclusive than models used elsewhere (Starr, 2011). Unlike countries such as Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 3 A Health Disparity Action Plan: Achieving Equity through Clinical Trials, Affordable Care, and (...truncated)