
You’re Invited: 3rd Annual South Carolina Sickle Cell Symposium
We invite our community to attend the 3rd Annual South Carolina Sickle Cell Symposium Saturday, October 3, 2026.
Chronic and rare disease patients face battles every day that other Americans do not have to deal with. From access to adequate health care, to the cost of treatment and medications to treat their conditions—Policy issues can present opportunities to make meaningful, lasting change for everyone.

We invite our community to attend the 3rd Annual South Carolina Sickle Cell Symposium Saturday, October 3, 2026.
Get ready to dance, laugh, and make a difference at Fun Bobby’s Silent Boogie for a Cause, S.A.F.E.’s 2nd annual silent disco fundraiser!

Individuals can join a team, create their own team, or simply register individually. The virtual event allows people around the US to join in at their own pace.
Every step makes a difference at the S.A.F.E. 1 in 26 Run/Walk, happening Sunday, November 1, at James Island County Park.
Come together for an afternoon of food, music, friendship, and purpose at S.A.F.E.’s Purple With a Purpose on Sunday, November 8, at Bohemian Bull on James Island.

Federal lawmakers have officially introduced the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act of 2026 (also known as the FED UP with Bleeding Disorders Act). With key bipartisan backing—notably co-sponsored by South Carolina’s own Representative Joe Wilson (R-SC-02)—this legislation marks a pivotal shift toward health equity in specialized medicine.

Year-end polls in the last couple of weeks have all reported that the rising cost of health care is among Americans biggest worries. Insurance coverage for prescription drugs has been decreasing as their prices have been increasing. As PBS Wisconsin’s Marisa Wojcik learned, not all health plans are created equal.

25 States Have Adopted “All Copays Count” Legislation and Almost All Unanimously H.3934 & S.330 would protect patients by requiring insurers and PBMs to count

The role of Pharmacy Benefit Managers, more commonly known as “PBMs,”
has been mentioned frequently in debates and discussions in the South
Carolina State House in recent months, mirroring national attention on the
topic by Republicans and Democrats alike.

May 5, 2025 Dear Chairman Gagnon, I am writing to express our support for H. 3934, which will have a direct positive impact on the
State and National Patient Advocacy Organizations and nonprofits who work and advocate to support chronic and rare patients in South Carolina
Industry, Consultants, Researchers, Hospitals Associations, Universities who support patients access to treatment
Organizations and state agencies who care greatly about patient health care

25 States Have Adopted “All Copays Count” Legislation and Almost All Unanimously H.3934 & S.330 would protect patients by requiring insurers and PBMs to count

May 5, 2025 Dear Chairman Gagnon, I am writing to express our support for H. 3934, which will have a direct positive impact on the

H. 3934 General Bill Summary: Pharmacy Benefits. Sponsors: Rep. Kevin Hardee & Rep. Carla Schuessler. Introduced in the House on February 6, 2025.

As of July 2024, South Carolina remains one of 10 states that has yet to expand Medicaid coverage. That leaves almost half a million people

WASHINGTON – Today, Senator Tim Scott’s (R-S.C.) and Senator Cory Booker’s (D-N.J.) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 passed out of the Senate Committee on Health, Education, Labor and Pensions. This legislation reauthorizes the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program beyond fiscal year 2023 through fiscal year 2028.

The All Copays Count Coalition comprises more than 80 national 501c3 non-profit, non-partisan patient advocacy and provider organizations representing millions of people living with serious, complex, chronic illness. The people we represent need full and ongoing access to medical care, including specialty medications, to treat their conditions and to keep them healthy.