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Advocacy Map & Tools

Sick Cells empowers volunteer advocates with tools, tips, and other information to strengthen their engagement with elected officials, decision-makers, and other stakeholders. Check out our Advocacy Toolkits and State Advocacy Resources below.

Advocacy Toolkits Archive

Our Advocacy Toolkits include detailed steps, guidance and resources for individuals to develop and implement an advocacy strategy.  Toolkits can be applicable for all levels of advocacy. Our aim is to provide readers with ideas for creating their own SCD advocacy initiatives.

State Advocacy Resources

Use our interactive map to find advocacy resources to help your state and local advocacy efforts.

*NEW CONTENT*

Sick Cells has added state-specific legislation to our map. You can find them by selecting your state or by selecting “Legislation” or a “Theme” in the resources tab.

Alabama

Alabama has approx 2851 residents with SCD (source)


Alabama added sickle cell testing to their newborn screening in 1987.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Alaska

Alaska has approx 45 residents with SCD (source)


In Alaska, there were 0 newborns with SCD in 2019, and 2 newborns with SCD in 2018 according to the Bloodspot Newborn Screening Program,
Please check back for updates as Sick Cells is currently working to collect more prevalence data.

Arizona

Arizona has approx 635 residents with SCD (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Arkansas

Arkansas has approx 1266 residents with SCD (source)


Arkansas added sickle cell testing to their newborn screenings in 1988.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

California

California has an average of 4,707 residents with SCD (source)


California added sickle cell testing to their newborn screening program in 1990.
California had 69 babies born with SCD in 2019 and 64 babies born with SCD in 2018 according to the health department's Genetic Disease and Newborn Screening Program.

Colorado

Colorado has approx 371 residents with SCD (source)


Colorado added sickle cell testing to their newborn screenings in 1978.
In Colorado there are approx 10-15 babies born with SCD each year according to the Colorado Newborn Screening Program.

Connecticut

Connecticut has approx 1252 residents with SCD (source)


Connecticut added sickle cell testing to their newborn screenings in 1990.
Since the start of testing for sickle cell in 1990, the newborn screening program has identified over 374 babies born with SCD, an average of 12 babies each year.

Delaware

Delaware has approx 561 residents with SCD (source)


Delaware added sickle cell testing to their newborn screenings in 1985.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

District of Columbia

The District of Columbia (DC) has approx 1413 residents with SCD (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Florida

Florida has approx 8803 residents with SCD (source)


Florida added sickle cell testing to their newborn screenings in 1988.
In Florida, there were 149 babies born with SCD in 2019 and 212 babies born with SCD in 2018 according to the health department's Children's Medical Services' Office.

Georgia

Georgia has approx 5797 residents with SCD (source)


Georgia added sickle cell testing to their newborn screenings in 1998.
Please check back for updates as Sick Cells is currently working to collect more prevalence data.

Hawaii

Hawaii has approx 82 residents with SCD (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Idaho

Idaho has approx 36 residents with SCD (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Illinois

Illinois has approx 3720 residents with SCD. (source)


Illinois added sickle cell testing to their newborn screenings in 1989.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Indiana

Indiana has approx 1162 residents with SCD. (source)


Indiana added sickle cell testing to their newborn screenings in 1985.
In Indiana, there are approx 30 babies born each year with SCD.

Iowa

Iowa has approx 254 residents with SCD. (source)


In Iowa, there were 10 babies born with SCD in 2018.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Kansas

Kansas has approx 417 residents with SCD. (source)


Kansas added sickle cell testing to their newborn screenings in 1990
In Kansas, there were 10 babies born with SCD in 2011
Please check back for updates as Sick Cells is currently working to collect updated prevalence data.

Kentucky

Kentucky has approx 745 residents with SCD. (source)


Kentucky added sickle cell testing to their newborn screenings in 1995
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Louisiana

Louisiana has approx 3936 residents with SCD. (source)


Louisiana added sickle cell testing to their newborn screenings in 1992, though some facilities were testing as early as 1972.
In Louisiana, there were 84 babies born with SCD in 2019 and 73 babies born with SCD in 2018 according to the Health Department's Genetic Disease Program.

Maine

Maine has approx 75 residents with SCD. (source)


In Maine, there was an average of 1 baby born each year with SCD from 2014-2019
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Maryland

Maryland has approx 4860 residents with SCD. (source)


Maryland added sickle cell testing to their newborn screenings in 1985.
In Maryland from 2012-2016, 475 newborns were diagnosed with SCD; an average of 97 infants per year, according to the Health Department.

Massachusetts

Massachusetts has approx 1957 residents with SCD. (source)


In Massachusetts, there is an average of 40 babies born each year with SCD according to their newborn screening program.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Michigan

Michigan has approx 3322 residents with SCD. (source)


In Michigan, there is an average of 60 babies born each year with SCD as of 2019.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Minnesota

Minnesota has approx 570 residents with SCD. (source)


Minnesota added sickle cell testing to their newborn screenings in 1988
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Mississippi

Mississippi has approx 3092 residents with SCD. (source)


Mississippi added sickle cell testing to their newborn screenings in 1988.
In Mississippi, there were 41 babies born with SCD in 2016 and 51 babies born with SCD in 2015.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Missouri

Missouri has approx 1903 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Montana

Montana has approx 14 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Nebraska

Nebraska has approx 148 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Nevada

Nevada has approx 539 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

New Hampshire

New Hampshire has approx 33 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

New Jersey

New Jersey has approx 4256 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

New Mexico

New Mexico has approx 163 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

New York

New York has approx 8661 residents with SCD. (source)


New York added sickle cell testing to their newborn screenings in 1975
Please check back for updates as Sick Cells is currently working to collect prevalence data.

North Carolina

North Carolina has approx 3973 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

North Dakota

North Dakota has approx 143 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Ohio

Ohio has approx 3725 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Oklahoma

Oklahoma has approx 753 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Oregon

Oregon has approx 180 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Pennsylvania

Pennsylvania has approx 3743 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Rhode Island

Rhode Island has approx 184 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

South Carolina

South Carolina has approx 3694 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

South Dakota

South Dakota has approx 19 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Tennessee

Tennessee has approx 2077 residents with SCD. (source)


Tennessee added sickle cell testing to their newborn screenings in 1985
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Texas

Texas has approx 7132 residents with SCD. (source)


Texas added sickle cell testing to their newborn screenings in 1983.
In Texas, there were 213 babies born with SCD in 2019 and 200 babies born with SCD in 2018.

Utah

Utah has approx 82 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Vermont

Vermont has approx 11 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Virginia

Virginia has approx 2961 residents with SCD. (source)


Virginia added sickle cell testing to their newborn screenings in 1989
In Virginia, an average of 75 babies are born with SCD each year from 1989-2019.
Please check back for updates as Sick Cells is currently working to collect prevalence data.

Washington

Washington has approx 370 residents with SCD. (source)


In Washington, there were 12 babies born with SCD in 2016 and 9 babies born with SCD in 2015
Please check back for updates as Sick Cells is currently working to collect prevalence data.

West Virginia

West Virginia has approx 200 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Wisconsin

Wisconsin has approx 1146 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Wyoming

Wyoming has approx 16 residents with SCD. (source)


Please check back for updates as Sick Cells is currently working to collect prevalence data.

Untitled: SCD Insurance Coverage

§ 17:48A-7hh (2013, New Jersey, Passed)

Establishes coverage mandates for every “medical services corporation” providing insurance coverage for those with SCD.

Untitled SCD Health

§ 20-15-3 (2016, Arkansas, Passed)

Establishes SCD and other rare disease testing for newborns.

Untitled SCD General Law

Section 15a (2015, Massachusetts, Passed)

Establishes SCD screening for newborns and children. Provides screening programs, treatment centers, and testing for anyone with SCT or SCD.

Sicke Cell Anemia

§ 36-797.41 (2016, Arizona, Passed)

Establishes legislation for SCD testing, care and treatment of children and adults, and reimbursement opportunities.

Untitled SCD: Treatment Program

§ 130A-129 (2005, North Carolina, Passed)

Establishes a SCD treatment program.

Untitled: SCD Insurance Coverage

§ 95-28.1 – 1 (2014, North Carolina, Passed)

Prohibits discrimination against any person possessing SCT or hemoglobin C trait.

Untitled: SCD Contracts

§ 58-65-70 (2015, North Carolina, Passed)

Prohibits denying medical service to sickle cell patients.

Untitled SCD General Policies

§ 58-58-25 (2005, North Carolina, Passed)

Prohibits discrimination against any person possessing SCT or hemoglobin C trait.

Untitled SCD Public Health

§ 191.370 (1985, Missouri, Passed)

Describes the duties of the programs developed for care & treatment of SCD.

Untitled SCD Public Health

§ 191.365 (1985, Missouri, Passed)

Establishes a treatment program for those with SCD and SCT.

Untitled: SCD Health

§ 26:5B-6 (2016, New Jersey, Passed)

Mandates that the Department of Health and Medical Society of New Jersey and Rutgers, the State University will provide educational resources in both English and Spanish detailing the risk factors of  Sickle Cell Disease and descriptions regarding treatment and symptom resources regarding Sickle Cell.

Untitled: SCD Health

§ 26:5B-5 (2013, New Jersey, Passed)

Establishes different information on sickle cell disease and its effects on the current population.

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