Panacea at what price?
Photographer: Eric Piermont/AFP via Getty Images
How to Pay for Million-Dollar Cures
New gene therapies for sickle cell will test whether the US health-care system can afford to deliver miracles for the many, not just the few.
LaShaundra Carter spent the first three decades of her life defying the odds. When she was 5, a doctor delivered the news that she might not make it to 12. When she turned 12, her family was told that 16 might be out of reach. Then it was 21. Then it was that she shouldn’t have children.
Born with sickle cell disease, a genetic disorder that causes the red blood cells that ship oxygen around the body to warp and get trapped in blood vessels, Carter survived the dire predictions. By the time she was 30, she had been in and out of the hospital, sometimes for weeks at a time, grappling with the collateral damage of those misshapen cells. Complications ranged from serious, like the pain crises that some patients describe as shards of glass running through their veins, to life-threatening — blood clots in her lungs, a bout of sepsis that took her hearing in one ear, and the liver failure that nearly killed her when she was giving birth to her now 11-year-old son Isaiah.