I support Sick Cells because every person living with sickle cell deserves fierce advocates fighting to ensure that they can lead their healthiest, most fulfilling life.
Cystic fibrosis(CF) is often called “the best story in medicine.” Thirty years ago, parents of people with CF were often told their child was unlikely to make it past high school. Today, parents of people diagnosed with CF are told a very different story. They’re told a story of recent breakthrough modulator drugs that have radically changed the lives of people living with CF. They’re told of care center networks that employ people equipped to attack all aspects of the disease and add years of life to people living with cystic fibrosis. They’re told that their child’s diagnosis is something they’ll have to fight hard against but is no longer a death sentence. They’re told a story that every parent to a child with a rare disease in America should be told: a story of hope.
What gets less Washington Post front page coverage is the “worst story in medicine.” The story of progressively worse outcomes for diseases that predominantly affect black people in America. The story of median life expectancy decreasing for people living with diseases like sickle cell. The story of a broken and inherently biased health care system that doubts the severity of sickle cell crisis. The story of a society more equipped to direct funding and support toward diseases that predominantly impact white people. The story of black people living with diseases like sickle cell needlessly dying younger and younger.
A doctor sitting down with a parent of a child newly diagnosed with sickle cell might impart hope while warning of unfathomable struggles to come. They might warn that there is currently a lack of a robust pipeline of treatments and therapies. Warn that stigma and barriers to care are rampant for people living with sickle cell. Warn that a child living with sickle cell will have to be a fighter without a lot of systemic hope.
But that doctor might also share that in 1988, the outlook for a rare disease like cystic fibrosis was similarly bleak, yet so much has changed. That doctor might share how communities rallied, research was funded and progress was made. They might share that the same efforts might soon be applied to diseases like sickle cell, and that their newly diagnosed child with sickle cell might be born into a world that cares. A world that fights to make sure people living with sickle cell, their parents, and their loved ones are told the story they deserve: a story of hope.
I support Sick Cells because I believe stories of hope are important. Why do you support Sick Cells?