New Sickle Cell Therapies Will Be Out of Reach Where They Are Needed Most
By Rebecca Robbins and Stephanie Nolen,
The New York Times
| 12. 08. 2023
The Food and Drug Administration’s approval on Friday of two groundbreaking gene therapy treatments for sickle cell disease has brought a rare moment of hope and celebration to people with the agonizing blood disorder.
But there is no clear path for the new therapies — one-time treatments so effective in clinical trials that they have been hailed as cures — to reach the countries where the vast majority of people with sickle cell live. Shortly after the approval their manufacturers announced sticker prices in the millions of dollars: $3.1 million for Lyfgenia, made by Bluebird Bio, and $2.2 million for Casgevy, made by Vertex Pharmaceuticals.
Lyfgenia will launch in the United States. Vertex has been prioritizing winning approval in six wealthy countries — the United States, Italy, Britain, France, Germany and Saudi Arabia — that, by one estimate, are home to 2 percent of the global sickle cell population.
Three-quarters of the world’s sickle cell patients are in sub-Saharan Africa. Several million of them are believed to be sick enough that they would be eligible for the new therapies...
Related Articles
Several recent Biopolitical Times posts (1, 2, 3, 4) have called attention to the alarmingly rapid commercialization of “designer baby” technologies: polygenic embryo screening (especially its use to purportedly screen for traits like intelligence), in vitro gametogenesis (lab-made eggs and sperm), and heritable genome editing (also termed embryo editing or reproductive gene editing). Those three, together with artificial wombs, have been dubbed the “Gattaca stack” by Brian Armstrong, CEO of the cryptocurrency company...
Alice Wong, founder of the Disability Visibility Project, MacArthur Genius, liberationist, storyteller, writer, and friend of CGS, died on November 14. Alice shone a bright light on pervasive ableism in our society. She articulated how people with disabilities are limited not by an inability to do things but by systemic segregation and discrimination, the de-prioritization of accessibility, and the devaluation of their lives.
We at CGS learned so much from Alice about disability justice, which goes beyond rights...
By Adam Feuerstein, Stat | 11.20.2025
The Food and Drug Administration was more than likely correct to reject Biohaven Pharmaceuticals’ treatment for spinocerebellar ataxia, a rare and debilitating neurodegenerative disease. At the very least, the decision announced Tuesday night was not a surprise to anyone paying attention. Approval...
By Emily Glazer, Katherine Long, Amy Dockser Marcus, The Wall Street Journal | 11.08.2025
For months, a small company in San Francisco has been pursuing a secretive project: the birth of a genetically engineered baby.
Backed by OpenAI chief executive Sam Altman and his husband, along with Coinbase co-founder and CEO Brian Armstrong, the startup—called...