In Progress: Human Shields

A true account of…

A Ukrainian family’s escape from Russian bombs…

Medical profiteers ~who lives, who dies…

Human Shields tells the true story of a Ukrainian mother’s need to escape Russian bombs in her homeland only to fight an equally lethal battle with her son’s lung-ravaging illness, cystic fibrosis (CF). As they leave their home and belongings behind, the family encounters dangerous military checkpoints and a run-in with soldiers where they are used as human shields. But they also find a network of kind strangers who drive into the war with supplies or transportation, or who offer their own housing, clothes and food once a refugee family has crossed into a new country. For  Victoria and her family, this is where the rest of the story begins—will the relatives they left behind survive the war? Will they ever return to their village and home? Is it possible to move on from trauma after learning their Ukrainian neighbors, with a hand-made “Children” sign on their car, were fired upon and the whole family slaughtered? And, will the family find a new home where young Yev can access new medications that—in wealthy countries—make CF a manageable condition rather than a merciless killer? Yev’s mother Victoria knows too well that the stakes are high—with only outdated treatments to rely on, her son will face harsher and harsher illness and likely death at a young age as CF progresses.

Alongside Victoria and Yev’s story, the author weaves in an account of her own family’s experience with CF in the US, a roller-coaster ride of disease progression halted in its tracks by astonishing scientific advancements in the United States.

In less privileged settings, though, CF attacks and destroys young bodies as though scientists had never discovered the celebrated new treatments. A third heroic CF mother enters the narrative here—Aleksandra’s teenage daughter has CF, but Poland’s national health program cannot meet the steep price US drugmaker Vertex Pharmaceuticals demands for its miraculous breakthrough drug. Human Shields illuminates what it takes to change the course of a once universally lethal disease—brilliant researchers, individual and non-profit efforts, public and private funding and leadership. At the same time, the book examines profit motivations from the perspectives of drug-makers (how much is enough to spur additional innovation) and of the families who know a life-saving medicine dangles just out of reach.

 As Aleksandra lobbies her government and works to keep her daughter healthy, she begins to help other families with cystic fibrosis. Her tale offers a hopeful message: this world we inhabit includes folks who aren’t interested in dropping bombs or withholding medical breakthroughs from dying children. Among us are bucket brigades of heroes who step forward to douse the flames of war or healthcare inequities, and who remind us that seemingly insurmountable battles are sometimes winnable, and certainly less lonely, when kind strangers jump into the fray.