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Advocates tell RDAC Connecticut needs better testing, centralized data and insurance protections for sickle cell and hemophilia
Summary
Speakers representing sickle cell and hemophilia communities described statewide gaps in case identification, data sharing, and family burdens from treatment costs and access; they urged coalition development, expanded trait testing, and policy supports.
Advocates at the Rare Disease Advisory Council meeting urged stronger statewide action on sickle cell disease and hemophilia, including centralized data, expanded testing, care coordination and insurance protections.
Gary Smart, interim executive director of the Connecticut chapter of the Sickle Cell Disease Association of America, described the biology and complications…
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