September is Sickle Cell Awareness Month—but that’s every month for patients living with Sickle Cell Disease (SCD). We spoke to one patient advocate about how much work needs to be done—and explain why proposed policy could impede needed investment.
“As an advocate, Sickle Cell Awareness Month for me is every month, every day,” Teonna Woolford, Co-Founder and CEO of Sickle Cell Reproductive Education Directive (SC RED), told Good Day BIO in an interview about her experience as a SCD patient and advocate.
Sickle Cell Disease (SCD) impacts approximately 100,000 people in the U.S.,according to the CDC, with a disproportionate impact on Black and Hispanic communities, occurring in 1 in 365 African American births and 1 in 16,300 Hispanic births.
It's the “epitome of disparity,”said Dr. Ted Love, President and CEO of Global Blood Therapeutics (GBT), which manufacturers Oxbryta, the first FDA-approved drug targeting the underlying cause of SCD rather than just its symptoms. And “the lack of investment” in research “is another disparity,” he added.
We are seeing significant developments—from GBT’s Oxbryta, to promising gene therapy clinical trials run by Bluebird Bio and Vertex Pharmaceuticals.
But this progress will undoubtedly stall if drug price controls are enacted.H.R. 3 “may mean patients will have fewer choices,” says Michele Oshman, VP for External Affairs at BIO and Executive Director of the Council of State Bioscience Associations. “Cutting the innovator's ability to recoup R&D costs, and so limiting that reimbursement for medicines, is going to result in fewer medicines.”
Read: How price controls hurt patients
The pandemic has made SCD care and advocacy substantially more difficult—and some SCD patients cannot be admitted for treatment with hospitals full with COVID patients. SC RED was established in April 2021 to “provide education on reproductive health concerns, establish standards for effective and high-quality reproductive health care across the life span, and advocate for policies and processes that will improve access to comprehensive reproductive health care,” said Woolford—read more about the organization and her experience.
Learn how we can help patients access medicines without harming innovation at www.savecures.org.
You can take action and tell your Member of Congress why H.R. 3 will harm patients and future cures at www.savecures.com.
Read: For Sickle Cell Disease patients, every month is Sickle Cell Awareness Month
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