2023 -- H 6502

========

LC003046

========

     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 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

     Referred To: House read and passed

     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.

========

LC003046

========

LC003046 - Page 2 of 2