| R 398 |
| 2023 -- H 6502 Enacted 06/08/2023 |
| H O U S E R E S O L U T I O N |
| COMMEMORATING "WORLD SICKLE CELL AWARENESS DAY" ON JUNE 19, 2023 |
Introduced By: Representatives Kislak, Shekarchi, Blazejewski, Chippendale, McNamara, Ackerman, Stewart, Alzate, Cruz, and Potter |
| Date Introduced: June 08, 2023 |
| WHEREAS, June 19th is officially designated and observed annually as World Sickle |
| Cell Awareness Day. This year, “Shine the Light” is the national awareness campaign to increase |
| public knowledge and an understanding of Sickle Cell Disease (SCD), and the challenges |
| experienced by patients, their families and caregivers; and |
| WHEREAS, Sickle Cell Disease is an inherited blood disorder that causes a person’s red |
| blood cells to become misshapen with the appearance of a sickle or crescent moon; and |
| WHEREAS, Sickle Cell Disease is among the most common inherited blood conditions |
| in the United States and across the world affecting millions of people, primarily those of African |
| descent; and |
| WHEREAS, Annually in the United States, approximately 3,000 babies are born with |
| SCD and an estimated 100,000 Americans are currently living with the disease; and |
| WHEREAS, Health equity refers to the fair and equal distribution of health and |
| healthcare resources, regardless of race, ethnicity, socioeconomic status, or other social |
| determinants of health. In Rhode Island, there are still disparities in the management of SCD that |
| contribute to health inequities for many people in the State; and |
| WHEREAS, Barriers to care include implicit bias, racism, inadequate insurance |
| coverage, lack of transportation, and limited access to specialists and comprehensive care, and |
| often leads to health-related stigma, frequent hospitalizations, higher rates of complications and |
| early mortality, and decreased quality of life for persons with SCD; and |
| WHEREAS, Currently in Rhode Island, approximately 300 individuals are being treated |
| for Sickle Cell Disease with active efforts to improve their care but with continued challenges due |
| to underlying social determinants of health and significant challenges in accessing care that |
| contribute to disparities in the outcomes and quality of life for many persons with SCD; and |
| WHEREAS, People suffering from the disease often experience serious pain, chronic |
| anemia, infection, and other acute and chronic complications requiring blood transfusions but |
| there remains a shortage of blood donations in the State and nationally, particularly among |
| appropriately matched donors that are most suitable for individuals with sickle cell disease; and |
| WHEREAS, There is not yet a universal cure for this life-threatening disease, there are |
| effective treatments, included with a multi-disciplinary comprehensive and patient-centered |
| model that include both medical and psychosocial care, ensuring expanded availability of |
| resources and coverage, financial assistance, additional support for education and job training, |
| and prioritizing and investing in programs and initiatives specifically focused on improving the |
| quality of SCD care across the State and across the lifespan from infancy through adulthood, |
| Rhode Island can improve access and care for all individuals living with SCD; now, therefore be |
| it |
| RESOLVED, That this House of Representatives of the State of Rhode Island hereby |
| commemorates June 19, 2023 as “World Sickle Cell Awareness Day” and urges healthcare |
| providers, public health organizations, and community groups to “Shine a Light” and raise |
| awareness for the available resources and support and fund the initiatives still desperately |
| required to help care for all people living with SCD; and |
| RESOLVED, That the Secretary of State be and hereby is authorized and directed to |
| transmit duly certified copies of this resolution to the Rhode Island Blood Center and the Sickle |
| Cell Disease Association of America, Inc. |
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| LC003046 |
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