Special Report: Why are so few patients taking the new sickle cell drugs?

A new drug runs into red tape from insurers, a long history of bias against sickle-cell patients, and debate over data. ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ 

We finally have new drugs for sickle cell disease. Why are so few patients taking them? By Jason Mast Lena Harvey (Lee Klafczynski for STAT) Born with sickle cell disease, Lena Harvey's life had been marked by pain. But in February 2021, she filled her prescription of Oxbryta, the fourth-ever medication for sickle cell, a blood disorder that primarily affects people of African ancestry and has long been overlooked by drugmakers. Harvey said the drug has changed her life, yet cases like hers remain rare. Oxbryta’s manufacturer says "over 12,000" people have ever filled a prescription, “the vast majority” of them in the U.S. That means only a fraction of the 100,000 Americans living with sickle cell are actively on it. Another treatment, Adakveo, has reached still fewer. Even older, more basic interventions are vastly underused. Read More Sponsored insight by STAT+ Searching for the perfect gift? Get 3 months of STAT+ for $30. A STAT+ subscription gives you unlimited access to in-depth investigative journalism, groundbreaking analysis, subscriber-only newsletters, and industry event discounts. With a premium membership, you'll get your life sciences news direct from the source. For a limited time only, get three months of STAT+ for just $30. Subscribe now. More great reads from STAT this week Why EPA’s long-awaited proposal on two ‘forever chemicals’ is bound to be controversial By Brittany Trang Racism leads to troubled sleep — and it’s putting Black Americans’ heart health at risk By Katherine Harmon Courage Every kick, a reminder: in post-Roe California, a painful wait before ending a wanted pregnancy By Eric Boodman Under new rules, methadone clinics can offer more take-home doses. Will they? By Andrew Joseph Gene therapy trial shows promise for treating ‘bubble boy’ syndrome. Now comes the hard part By Brittany Trang Watch: Fentanyl test strips help prevent overdoses, why are they still controversial? By Hyacinth Empinado Opinion: Specialized centers can help realign the U.S.’s moral compass for sickle cell disease By Amar Kelkar, Julie Kanter and Payal Desai Saturday, December 24, 2022       1 Exchange Pl, Suite 201, Boston, MA 02109 ©2022, All Rights Reserved. I no longer wish to receive STAT emails Update Email Preferences | Contact Us | View In Browser