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REINTRODUCTION OF THE RESOLUTION EXPRESSING SUPPORT FOR THE DESIGNATION OF THE LAST DAY OF FEBRUARY EACH YEAR AS ``RARE DISEASE DAY''
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HON. ANDRE CARSON
of indiana
in the house of representatives
Friday, February 26, 2021
Mr. CARSON. Madam Speaker, I am pleased to reintroduce this resolution with my colleague Rep. Richard Hudson of North Carolina. Our resolution supports the designation of Rare Disease Day on the last day of February. I am pleased that this resolution has been endorsed by the National Organization for Rare Disorders (NORD) and am thankful for its leadership on these critical issues over many years.
Nearly one in ten Americans live with one or more of the roughly 7,000 known rare diseases. More than half of those struggling with rare diseases--defined as affecting less than 200,000 people--are children. Sadly, many rare diseases and conditions are serious, life-threatening, and lack effective treatments. These are not just statistics: I am sure most of us know at least one family member or friend who has been affected by or struggled with the unique challenges of rare diseases.
Moreover, as we observe Black History Month, it's important to know that African Americans and other minorities are especially vulnerable to rare diseases, including Sickle Cell Anemia and Sarcoidosis. These diseases and conditions--including Thalassemia and Hereditary ATTR
(hATTR) amyloidosis--disproportionately affect African Americans. Despite these unique obstacles, African Americans have an inspiring tradition of both combatting rare diseases and improving medical science.
One great example is Dr. Charles Drew, an African American scientist who helped found the modem ``blood bank,'' which helped dramatically expand blood transfusions. A faculty member at Howard University, Dr. Drew's pioneering work in blood transfusions took place against the backdrop of segregation and discrimination. During his time overseeing the Red Cross's blood plasma donation program, Dr. Drew was prohibited from donating his own blood because of the color of his skin. Despite these obstacles, Dr. Drew's work improved the practice of blood transfusions, which is now a lifeline for many individuals struggling today with rare diseases. The examples of Dr. Drew and countless other researchers, physicians, nurses, activists, and patients underscore the importance of bringing additional awareness to rare diseases.
Despite the many challenges, some progress has been made. More than 840 drugs and biologics have been approached by the Food and Drug Administration (FDA) for the treatment of rare diseases. However, Congress must do more to combat rare diseases. In addition, more work needs to be done to bring attention to the needs of those who struggle with rare diseases, and to celebrate their courage. That's why Rep. Hudson and I are reintroducing this important resolution. Each year, many individuals with rare diseases and their loved ones celebrate Rare Disease Day to share their stories and educate communities of researchers, health professionals, governments, and community organizations about how rare diseases affect them.
In 2019, more than 100 countries observed Rare Disease Day. Our resolution expresses support for the designation of the last day of this month as Rare Disease Day. Congress should recognize this work and improve our efforts to address the challenges facing the rare disease patient community.
Madam Speaker, I hope my colleagues will join us in supporting Rare Disease Day's designation on the last day of February to better champion people with rare diseases. I urge the House to support this resolution.
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SOURCE: Congressional Record Vol. 167, No. 37
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