With oneSCDvoice, People Living with Sickle Cell Disease Have an Online Community to Call their Own
By Freddie Allen (Editor-In-Chief, NNPA Newswire)
People living with sickle cell disease (SCD) fight a lifelong, uphill battle against severe pain, isolation and a medical establishment often ill-equipped to offer compassionate, informed care.
That’s why Pfizer Inc., partnered with the Sickle Cell Disease Association of America (SCDAA) to create, oneSCDvoice, a digital platform that provides access to resources designed to increase knowledge, emotional support, and help empower people living with SCD, according to a press release about the new platform.
SCDAA, is a national organization that has supported the needs of the SCD community since 1971 with 50-plus chapters that provide critical services to the local SCD community.
The Centers for Disease Control and Prevention says that sickle cell disease occurs in roughly 1 out of every 365 Black or African American births and about 1 in 13 Black or African American babies is born with sickle cell trait (SCT).
Gary Gibson, the president and CEO of Martin Center Sickle Cell Initiative, said that, historically, SCD patients often experience isolation.
Gibson said that, with the advent of social media over the last few years, there has been a tremendous explosion of people that are engaged and communicating about living with SCD. Advocates for people living with SCD wanted to organize those engagements in a way that would create a trusted resource.
“oneSCDvoice was developed to not only motivate advocacy around the disease, but also to help create a more informed and consistent voice for sickle cell disease patients and streamline access to all this information,” said Gibson. “So, with one-SCDvoice, now you have a place that you can trust with information about sickle cell disease. There’s a tremendous amount of information on [oneSCDvoice.com] that is curated and is constantly checked to make sure that it’s accurate.”
Gibson added that the platform is very user friendly and populated with a lot of information; users can also interact with experts that are a part of the oneSCDvoice community.
“In doing so, they are removed from that stigma of isolation that has been a part of sickle cell for so long,” Gibson said. “So, now they can become more comfortable and feel more connected to a community…once they get used to it, they’re going to feel like oneSCDvoice is better than Facebook.”
The platform features a library of links to credible information about SCD, curated by advocates, patients, and medical experts without Pfizer influence; the platform also includes clinical trial education and a “smart social wall” for community-driven conversations.
Dr. Kevin Williams, the chief medical officer for Pfizer’s Rare Disease Unit, said that the smart social wall allows people that are living with sickle cell disease to engage each other and share information about issues that concern them about work or life, in general. The smart social wall also provides information from “the trusted research community” to help focus those conversations.
Williams said that the Black Press plays a major role, as the vanguard for communicating credible, relevant information directly to the Black community.
“I see this as something that will be critical in raising awareness around not only oneSCDvoice, but also about sickle cell disease, in general,” said Williams.
Gibson said that, it’s important that people realize that companies like Pfizer have increased their investments in SCD research and treatment. Gibson said that those increased investments are a sign of hope for people living with SCD.
“Pfizer is investing a lot of money, not only in the development of treatments, but also in ways that will help SCD community members to improve their lives by providing access to platforms like oneSCDvoice,” said Gibson. “This was not true five years ago or even three years ago, but now it’s true and it’s an example that people are caring and investing more and that’s a sign of hope for everyone involved in the SCD community.”