Download the 2023 PDF Calendar of Events: CLICK HERE



BDASC Hosts 2nd Annual Legislative Breakfast

By continuing to host this breakfast, BDASC is building lasting relationships with Members of the Legislature that can be useful in the years to come. The community is becoming increasingly known by Representatives, Senators, and their Staff.

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South Carolinians Need You to Support H.3618

The South Carolina Hemophilia and Bleeding Disorders Coalition asks for South Carolina lawmakers to support H. 3618, Sponsored by Representative Henegan. Join 19 states to ensure all copays or coinsurance payments count toward patients’ annual health plan cost-sharing requirements.

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Copay Assistance for Drugs Must Now Count in Most Instances

In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the District of Columbia struck down a Trump administration federal rule that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

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South Carolina Department of Health and Human Services Warns Members of Potential Medicaid Scams

After nationwide reports of texts and calls seeking money to obtain or keep Medicaid coverage, the South Carolina Department of Health and Human Services is warning the community about current Medicaid renewal scams that may target Healthy Connections Medicaid members. Medicaid members in several states have received emails, texts or calls from scammers asking for money or gift cards to keep or reinstate health coverage.

Healthy Connections Medicaid is sending legitimate texts to let Medicaid members know their annual review form is in the mail and prompt them to complete their annual review form. These messages will never ask for money. The texts will come from (803) 879-4184. Only members who have a valid cell phone number on file will receive texts. The agency may also call or mail a request for additional information needed to make a decision about an individual’s application or annual review.

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FDA Approves Gene Therapy for Hemophilia B

CSL’s HEMGENIX ® (etranacogene dezaparvovec-drlb) provides a new treatment option that reduces the rate of annual bleeds, reduces or eliminates the need for prophylactic therapy and generates elevated and sustained factor IX levels for years after a one-time infusion. With the approval of HEMGENIX, CSL now offers an even more comprehensive portfolio of treatments for people living with hemophilia B, ushering in a new era of treatment options. The FDA approval is supported by results from the ongoing HOPE-B trial, the largest gene therapy trial in hemophilia B to date. Results from the study demonstrated that HEMGENIX allowed patients to produce mean factor IX activity of 39 percent at six months and 36.7 percent at 24 months post infusion.

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Advocates support House Bill 4987 to Address rising costs from AAP

Patient Advocacy Groups are calling on South Carolina Legislators to support bipartisan legislation to address rising out-of-pocket costs from an emerging insurance practice called “Accumulator Adjustment Programs (AAP).” This legislation will help patients better access their medicine and stay adherent. Unfortunately, health insurers and PBMs have adopted polices, often referred to as “accumulator adjustment programs” that block assistance towards a patient’s deductible and maximum out-of- pocket limits. AAPs further shift cost to patients, putting patients at risk of not being able to afford their medicines. South Carolinians need health insurers to count ALL payments and not discriminate against those patients living with chronic conditions.

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Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy

The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk for excessive bleeding, exposing them to further, and in some instances, serious complications. While there exist therapies with VWD-specific indications, it is not uncommon for these patients to still experience excessive bleeding while receiving treatment. These scenarios are challenging as there is sparce clinical data and a subsequent lack of clear guidance on the optimal management of bleeding in these particular settings. 

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Study in hemophilia B achieved primary endpoint of non-inferiority

Largest gene therapy study in hemophilia B achieved primary endpoint of non-inferiority in annualized bleeding rate after stable Factor IX (FIX) expression, assessed at 18 months following a single dose of etranacogene dezaparvovec. Etranacogene dezaparvovec also achieved secondary endpoint demonstrating statistical superiority in reduction of annualized bleeding rate compared to baseline FIX prophylactic therapy. Stable and durable FIX levels with mean FIX activity of 36.9 percent of normal in full study population at 18-months, compared to a mean of 39.0 percent of normal at 6 months. Manufacturing operations supporting process validation of etranacogene dezaparvovec successfully completed by uniQure.

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Lower Patient Copay Act Advances

More than 140 groups representing patients with serious and chronic conditions this week sent a letter to House Representatives Donald McEachin (D-VA) and Rodney Davis (R-IL) voicing support of their recent introduction of H.R. 5801, the Help Ensure Lower Patient Copays Act (HELP Copays Act). The legislation, which included seven additional co-sponsors from both sides of the aisle, is a two-part solution that helps ensure patients can cover their out-of-pocket costs and access needed medications.

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McEachin, Davis Introduce Bipartisan Legislation to Prevent Increased Prescription Drug Costs

Washington, D.C. – Today, Congressman A. Donald McEachin (VA-04) and Congressman Rodney Davis (IL-13) introduced the Help Ensure Lower Patient (HELP) Copays Act to protect patients from increased out-of-pocket prescription drug costs.
The bipartisan bill builds on previous efforts to lower out-of-pocket (OOP) costs for patients by prohibiting the use of copay accumulator programs, ensuring insurers cannot exclude the value of pharmaceutical manufacturer cost-sharing assistance from counting toward an enrollee’s annual cost-sharing limit.

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Help Us Continue Our Success! Hear our Stories

Bleeding Disorders Association of South Carolina welcomes you to register with our non-profit organization so we can keep you informed with information on events, advocacy initiatives, treatments therapies and research, fundraising opportunities, and educational and social networking opportunities. We invite those who are affected by bleeding disorders to register as well as individuals, families, friends and affiliates who are interested in supporting our organization and share our mission. You can download the registration form and fax, mail, or e-mail it to the Chapter, or you may register online. Welcome to Bleeding Disorders Association of South Carolina!