OP-ED: Uplifting Americans with Sickle Cell Disease

By Admiral Brett P. Giroir, Assistant Secretary for Health at the U.S. Department of Health and Human Services and Ja’Ron Smith, Deputy Assistant to the President

Providing more opportunities for all children and families, especially in minority communities, is a goal that all Americans can support. Over the past three years, America has felt the significant changes to empower minority communities by improving infrastructure, creating better economic and workforce opportunities, and addressing health disparities. Addressing Sickle Cell Disease is one of the many ways President Trump’s Healthcare Plan is providing Americans with better care.

In the United States, approximately 100,000 people live with sickle cell disease (SCD), an inherited condition causing some red blood cells to bend into a “C” or sickle shapes that clog blood vessels and prevent the body from getting enough oxygen. Sickling of cells leads to excruciating pain, organ failure, strokes, and premature death.

Although SCD was first described in 1910, treatment innovations have been rare, primarily due to scarce attention and investment. Data indicate that despite the availability of SCD treatment guidelines, many children and most adults with SCD do not receive the recommended treatments. Further, because patients with SCD experience severe episodic and chronic pain, they are frequently accused of “drug seeking” and wait significantly longer for treatment by healthcare providers who have little or no experience treating SCD.

This makes many patients and their families feel that those living with SCD are “always at the end of the line.” For too many, suffering and shortened lives seem inevitable. And indeed, life expectancy of adults with most severe forms of SCD remains 20-30 years shorter for Americans living with SCD than for the average American. We are determined to change this.

The Office of the Assistant Secretary for Health (OASH) at the Department of Health and Human Services (HHS) has taken bold steps to continue reducing health disparities impacting our nation. In March 2018, we launched an initiative to improve the lives of people living with SCD and create the necessary public-private partnerships and learning systems to improve health equity. An interagency Task Force, led by the HHS Office of Minority Health (OMH) and tasked with implementing the initiative, began with listening sessions with patients and advocacy groups.

First Lady Melania Trump participates in a roundtable on Improving the Lives of Americans Living with Sickle Cell Disease, Monday, Sept. 14, 2020, in the State Dining Room of the White House. (Official White House Photo by Andrea Hanks)

You can’t improve what you can’t measure—so OASH is working to help expand the Centers for Disease Control and Prevention’s comprehensive SCD database, which assesses data on SCD populations in select states. We also developed a comprehensive national infographic on the demographics, utilization, and care for patients with SCD who are enrolled in Medicaid or the Children’s Health Insurance Program (CHIP)—the majority of patients with SCD.

This infographic, published by the Centers for Medicare & Medicaid Services, confirmed what patients with SCD and advocates had told us – SCD care needs improvement. In 2017, more than half of children with SCD did not receive most of the recommended screenings, vaccinations, and treatments that would protect their health and improve their quality of life. Patients who went to the emergency department (ED) reported an average of five visits annually and they had more life-altering conditions (e.g., asthma, chronic pain and fatigue, kidney disease, depression) than other Medicaid/CHIP patients.

These data are sobering, and we intend to use them to drive accountability. With these data, the Trump Administration will take action to improve care by continuing to award funds to support children and families.

We also worked for two years with the National Academies of Sciences, Engineering, and Medicine (NASEM) to issue an SCD National Action Plan. This Action Plan is comprehensive about the impact of SCD nationally and the path to real change, including increasing awareness; addressing stigma; developing team-based systems of care; and creating clear treatment guidelines and training healthcare providers. The NASEM plan could transform the lives of people living with SCD and serve as a model for those with other chronic conditions, especially among vulnerable populations.

OASH and our interagency partners have led many other SCD activities over the past two years. President Trump issued presidential messages on National SCD Awareness Month in 2018 and 2019, and an official presidential proclamation this year. OMH has collaborated with other HHS agencies to launch educational programs, including a national webinar series for primary care providers; a journal supplement on care of patients with SCD in emergency departments; and outreach to stakeholders, including Historically Black Colleges and Universities. And most recently, the First Lady held a roundtable discussion, at the White House, in which people living with SCD, their families, SCD advocates, and health care professionals could express the impact of this disease on themselves and their families and contribute to the Administration’s bold initiatives.

The most exciting news is that the National Institute of Health’s is making progress on genetic therapies for SCD that are potentially curative. While these treatments are not available to everyone, there is real promise that more accessible genetic cures could give people living with SCD the pain-free lives they deserve. With the Food and Drug Administration accelerated approvals of two new SCD drugs, it is an encouraging momentum for more life-saving new medicines on the horizon.

We recognize the long-standing barriers to care people living with SCD face, but we are committed to building upon this progress and momentum to break them down forever. The future effort must be done with American compassion and full bipartisanship, transcend administrations, Congresses, and funding cycles. By solving SCD—a definable, tangible, treatable, and potentially curable disease—our hope for achieving the best health in America is one step closer.


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