Sikcell: People living with Sickle Cell

We still Hope

Sylvia Aruffo Female Buffalo Grove, IL United States: Like

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How has living with sickle cell made an impact on your life?: Maybe 20 years ago I heard about a project that an insurance company took on, to build a community clinic for Sickle Cell. They had the requisite Harvard expert as an advisor, who designed every part of the clinic for maximum provider efficiency. (I think it was in Baltimore, or maybe it was DC.) But when they opened the doors, no one came. None of the planning had included any input from the community. No community members were asked what would make a clinic attractive to them, or make them feel like it was "their" place—or even whether the Sickle Cell community wanted a separate, free-standing clinic at all. Through the years I kept a file drawer of periodical clippings on Sickle Cell and kept an eye on the FDA trials for any developments in treatments beyond hydroxyurea. I always kept in my mind that someday I would like help if anyone planned a major new initiative. So I don't have Sickle Cell, but I think the healthcare community does not understand what living with Sickle Cell is like.