The challenge of sickle cell disease (SCD) is compounded by the need to increase awareness and research for a condition that primarily impacts people of African descent, said experts at a panel sponsored by Pfizer at the National Association of Black Journalists Convention.
Why it matters: SCD primarily affects people of African descent—and historically, SCD has “largely been underfunded, understudied, undertreated,” said moderator Symone Sanders-Townsend, MSNBC host and former political strategist.
Inspired to fight back: After 30 years heading the Children’s Hospital of Philadelphia’s SCD center, Pfizer’s Dr. Kim Smith-Whitley was frustrated with the lack of new drugs for the disease—so she went into drug development. She headed R&D at Global Blood Therapeutics, which Pfizer acquired.
A family’s challenge: SCD advocate Akilah Coleman said she has the SCD gene without symptoms, but her daughter and husband—NFL star Tevin Coleman—have symptoms and must manage the disease.
The impact on fertility: Teonna Woolford described her SCD journey and her hope of having a child. She cofounded Sickle Cell Reproductive Health Education Directive, which fights stigma against people with SCD having children and seeks more federal support for them.
The path forward: We all need to come together to “level the playing field and give [SCD patients] a voice. Give them a face,” said Coleman.
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