Splenectomy

• It was also the day the Lacks family reached a settlement with Thermo Fisher Scientific, the biotech company that used and profited from her “HeLa” cells.
• Though the details remain confidential, this settlement is a long-awaited moment of justice and victory for Lacks and her family.
• However, the inequalities suffered by Lacks remain problems of the present.

Henrietta Lacks’s story

• Her cells were taken and retained for research purposes by white physicians and researchers at the hospital.
• It was Rebecca Skloot’s 2010 book The Immortal Life of Henrietta Lacks that drew attention to Lacks’s story and highlighted the racialized and patriarchal nature of medical ethics and research practices.
• Advocates — mainly people of colour — used the pandemic and subsequent COVID-19 vaccine developments to bring Lacks’s story back to life.

Not just her: Other stories of inequality

• Moore had hairy cell leukemia and, as part of his treatment, underwent a splenectomy at the University of California Los Angeles Medical Centre in 1976.
• Like Lacks’s, Moore’s cells had been unknowingly and unlawfully processed and patented as the “Mo” cell line.
• This violated the Havasupai’s consent agreement and had deeper repercussions, as these topics were considered taboo by the tribe.

The fight isn’t over yet

• But it should also serve as a reminder that the fight for a fairer and more equitable framework of medical ethics and genetic research is not over.
• Genetic materials are generally treated like any other objects and little to no consideration is given to the person.

• BOSTON, Sept. 15, 2022 (GLOBE NEWSWIRE) -- Today, Folia Health announced the initiation of the ASCEND Study, a first-of-its-kind, at-home observational real-world evidence study in which people living with sickle cell disease (SCD) will use Folias innovative technology platform to track their individual changes in symptoms and treatment use.
• The ASCEND Study, which is currently enrolling patients, is being conducted by Folia Health with funding from Global Blood Therapeutics, Inc. (GBT).
• The ASCEND study will utilize the Folia mobile app or desktop platform to capture this evidence directly from patients in real time.
• We hope that using the Folia Health platform in the ASCEND Study will deliver new insights by enabling sickle cell disease patients to track their experiences and participate in meaningful research from their home.

• In adults with primary ITP, ADVANCE met its primary endpoint demonstrating that a higher proportion of chronic ITP patients receiving VYVGART achieved a sustained platelet count response compared to placebo.
• ADVANCE is the first Phase 3 clinical trial of a neonatal Fc receptor (FcRn) blocker in ITP.
• Additional secondary endpoint data from the ADVANCE trial are consistent with primary and secondary platelet-derived endpoints and provide additional context on metrics that often drive treatment decisions.
• The Phase 3 ADVANCE trial was a randomized, double-blind, placebo-controlled, multicenter, global trial evaluating the efficacy and safety of VYVGART in adult patients with chronic or persistent primary ITP.

• Data from the study were featured in an oral presentation at the American Society of Hematology (ASH) Annual Meeting and Exposition, hosted virtually and in person from Dec. 11-14, 2021, in Atlanta.
• Consistent with previously reported data , durable improvements in hemoglobin concentration and markers of hemolysis and ineffective erythropoiesis, were observed for up to 72 weeks of treatment in both - and -thalassemia patients.
• Mitapivat was well tolerated, and the safety profile was consistent with previous studies.
• The data presented today continue to demonstrate that chronic treatment with mitapivat is well tolerated and has the potential to meaningfully improve hallmarks of thalassemia, including hemolysis and ineffective erythropoiesis.