At just six months old, Marqus Valentine was diagnosed with a blood disorder, called sickle cell disease hemoglobin SS, and given a life expectancy of just ten years. The disease affects red blood cells, contorting them into a sickle cell shape and causing a shortage of healthy blood cells, as well as severe pain. Now well into his thirties, Marqus and his sister Ashley are on a mission to destigmatize the disease and improve the quality of life and care for the sickle cell disease (SCD) community by changing current policy and shifting social norms.
Through the years, Marqus’ younger sister, Ashley, watched as her brother grew up in and out of hospitals and faced countless complications. The siblings witnessed how the lack of knowledge about sickle cell disease left those suffering to flounder. Insurance often didn’t cover rehabilitation or treatment, and at one-point Marqus lost all motor skills due to a seizure and was bed-ridden for two years. His entire family steadfastly cared for him, which eventually prevented their parents from working. Ashley says she has memories of the power being out at their home frequently because when forced to choose between electricity and medical bills, her parents chose the medical bills.
Marqus is frequently asked to speak on discussion panels about the disease, while navigating its difficulties. “Being able to teach someone about what I have; instead of them going off a stereotype or assumption is what motivates me to keep going,” Marqus said.
Ashley has dedicated her life to educating others about sickle cell disease and has become an advocate on behalf of her family and the community. Together, Ashley and Marqus have formed the non-profit “Sick Cells,” a group determined to raise awareness of the disease. The group shares stories of resilience and highlights the disparities the community faces, in hopes of destigmatizing the disease and influencing public officials to improve treatment and care for those living with sickle cell.
Ashley holds a Master’s in research methods and began working on sickle cell advocacy in Washington, D.C. She successfully wrote sickle cell disease into part of an $8 million Centers for Medicare & Medicaid Services (CMS) funding opportunity for improving quality of care. More recently, Ashley worked within the SCD community to form a taskforce and rally multiple stakeholders to advocate for federal sickle cell disease legislation. The bill passed and was signed into law in December 2018.
Marqus and Ashley are lobbying for more funding for sickle cell research and expanded drug development, all while continuing to fight the stigma. As Marqus shares his story and educates people, Ashley is working to drive the group forward towards policy changes which will support the entire sickle cell community.
A grateful Marqus said, “Teaming up with Ashley is phenomenal and I don’t think I would have made it this far without her support.”
The Blood Services Award is presented to an individual(s) or organization that is involved in activity that creates awareness of the importance of blood donation, helps to ensure a sufficient and safe blood supply is available to patients, and/or serves as an advocate for the blood community.
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