Prognosis
A $2.8 Million Miracle Therapy Eludes Some Long-Suffering Patients
Bluebird Bio’s Zynteglo could cure beta thalassemia, yet some older people with the disease say they have faced difficulties in trying to get treated
Liany Benedi has beta thalassemia, an inherited blood disorder that robs the body of oxygen, and sits for hourslong transfusions every three weeks.
Photographer: Eva Marie Uzcategui/BloombergLiany Benedi long dreamed of a cure for the disease that has shadowed her since she was 2 years old.
A year ago, her dream was realized, but getting access to the scientific breakthrough that could change her life forever has become a challenge all its own.