    [United States Statutes at Large, Volume 134, 116th Congress, 2nd Session]
    [From the U.S. Government Publishing Office, www.gpo.gov]

    Proclamation 10068 of August 31, 2020
    National Sickle Cell Disease Awareness Month, 2020
    By the President of the United States of America
    A Proclamation
    As our Nation recognizes National Sickle Cell Disease Awareness Month,
    we do so with an unwavering commitment to a future in which people with
    the condition live fully, without pain and impediments, and ultimately
    experience a cure. My Administration, through the Department of Health
    and Human Services (HHS), is leading unprecedented activity in research,
    medical education, and models of care in support of people with Sickle
    Cell Disease (SCD). A cure is within reach, the Food and Drug
    Administration (FDA) has approved new treatments and more are on the
    horizon, and several initiatives are underway to make better use of all
    available tools in the battle against this disease.
    SCD is a chronic, debilitating, inherited condition that afflicts
    100,000 Americans--primarily African-Americans and Hispanic-Americans.
    One in 13 African-Americans and approximately one in 100 Hispanic-
    Americans carry the gene for this disease. Those individuals with two
    copies of the gene have blood cells that are sickle-shaped, instead of
    cylindrical, which causes a disruption in blood flow that can damage
    many organs, including the brain and kidneys. A person with SCD can
    begin experiencing the negative effects in early childhood, including
    pain, organ damage, and risk of stroke. Unfortunately, it is estimated
    that only one in four patients with SCD in America receive the care that
    they need.
    My Administration puts action behind our words, which is why I signed
    into law the ``Sickle Cell Disease and Other Heritable Blood Disorders
    Research, Surveillance, Prevention, and Treatment Act of 2018''; (Public
    Law 115-327). The bill reauthorizes an SCD prevention and treatment
    program and authorizes initiatives for research, surveillance,
    prevention, and treatment of heritable blood disorders. HHS is leading

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    the way to identify and address barriers to care for patients, and
    several organizations have joined in developing education and training
    programs to better equip healthcare providers to identify and treat this
    disease. HHS has also begun collaborating with States on new payment
    models that will enable children living with SCD to receive the care
    they need.
    We have made exciting progress towards our goal of extending the lives
    of Americans with SCD by 10 years and finding a cure by 2029. In January
    2020, HHS launched a new, one-of-a-kind Sickle Cell Dis
    ease Training and Mentoring Program (STAMP), to train primary care
    providers on the basics of SCD evaluation and management. This
    innovative program is the result of critical collaboration between the
    Office of Minority Health and the Health Resources and Services
    Administration. The FDA has approved two new drugs to help prevent the
    complications of SCD, is providing leadership to reduce barriers and
    hasten the development of new treatments, and has developed multi-media
    educational resources for patients and their families. The National
    Institutes of Health (NIH) has initiated an aggressive portfolio of
    research, education, and capacity building, including the ``Cure Sickle
    Cell Initiative''; to accelerate gene therapies to cure the disease. NIH
    reports that the most promising genetic-based curative therapies for SCD
    could be available in clinical trials in the very near future.
    My Administration is leading on SCD advancements both in the United
    States and throughout the world. In May 2019, HHS leaders convened a
    roundtable with African health ministers, international health leaders,
    and SCD experts to chart a course to save hundreds of thousands of
    children around the world. Through NIH, we will continue to support the
    Sickle Pan African Research Consortium, and other Public Private
    Partnerships to develop gene-based cures.
    The United States is helping raise the profile of SCD as a public health
    priority, by drawing attention to the work underway to create meaningful
    programs that immediately improve patients' lives. My Administration is
    committed to advancing treatment, research, and quality-of-care to
    improve the lives of people with SCD--and ultimately to deliver a cure
    to the world.
    This month, we take a moment to recognize all Americans with SCD and
    celebrate our progress toward future treatments. Together, we will
    secure a healthier future for all Americans.
    NOW, THEREFORE, I, DONALD J. TRUMP, President of the United States of
    America, by virtue of the authority vested in me by the Constitution and
    the laws of the United States do hereby proclaim September 2020 as
    National Sickle Cell Disease Awareness Month. I call upon all Americans
    to observe this month with appropriate programs and activities to
    eliminate a disease we have known about for more than a century and to
    work to improve the quality of life of those living with SCD.
    IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of
    August, in the year of our Lord two thousand twenty, and of the
    Independence of the United States of America the two hundred and forty-
    fifth.
    DONALD J. TRUMP