Rédaction Africa Links 24 with Annalisa Merelli
Published on 2024-03-12 22:54:51
The recent news that the Phase 3 trial of Amylyx Pharmaceuticals’ amyotrophic lateral sclerosis (ALS) drug, known as Relyvrio, did not show benefits compared to a placebo was a devastating blow to the ALS patient community. A previous study had indicated that patients who took the drug for six months experienced less decline in physical function, such as speaking, using utensils, or climbing stairs, compared to those on a placebo. However, these results were not replicated in a larger study.
This outcome has far-reaching implications for Amylyx Pharmaceuticals, other ALS drug developers, physicians, and most importantly, patients who lost another potential treatment for this challenging disease. In interviews conducted by STAT, individuals with ALS shared their perspectives on the news and the impact it had on them and their communities.
Gwen Petersen, a 38-year-old living with ALS for nearly six years, had been taking Relyvrio since 2022, and experienced stabilization of her disease while on the drug. She now faces uncertainty about the future of her treatment and potential insurance coverage, as the trial results may deter insurers from covering the expensive medication. Despite her concerns, she remains hopeful and looks forward to learning more at an upcoming town hall with Amylyx.
John Russo, a 68-year-old advocate living with ALS for 11 years, expressed disappointment at the news about Relyvrio but emphasized the importance of ongoing research and hope for the future. He acknowledged the challenges of determining the effectiveness of ALS treatments and the impact of these uncertainties on patients.
Phil Green, a 54-year-old ALS advocate, highlighted the limitation of a one-size-fits-all approach to drug efficacy in ALS and raised concerns about the removal of hope associated with failed treatments. He stressed the importance of personalized medicine in addressing the diverse needs of ALS patients and advocating for continued research and development.
Katrina Byrd, a 52-year-old ALS advocate, shared her deep concerns about the affordability of treatments and the devastating realities faced by people living with ALS on a daily basis. Despite the challenges, she emphasized the resilience and strength of the ALS community in advocating for better treatments and inclusion in the drug development process.
In the face of setbacks and disappointments, these individuals continue to demonstrate resilience, hope, and determination to advocate for themselves and others living with ALS. While the recent trial results may have been discouraging, they remain committed to supporting research efforts and demanding better access to treatments for this relentless disease. By standing together and speaking out, they show that even in the face of adversity, the ALS community remains strong and united in the fight against this devastating illness.
