National Sickle Cell Disease Awareness Month, 2020, 55167-55168 [2020-19754]

Agencies

• Executive Office of the President

[Federal Register Volume 85, Number 172 (Thursday, September 3, 2020)]
[Presidential Documents]
[Pages 55167-55168]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2020-19754]




                        Presidential Documents 



Federal Register / Vol. 85 , No. 172 / Thursday, September 3, 2020 / 
Presidential Documents

[[Page 55167]]


                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 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 Disease 
                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.

[[Page 55168]]

                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.
                
                
                    (Presidential Sig.)

[FR Doc. 2020-19754
Filed 9-2-20; 11:15 am]
Billing code 3295-F0-P