We keep going. With our emancipated bodies, broken hearts and broken spirits, we stand together and demand to be a part of the ALS drug development process. If we fail, we get up again and again.
On March 8th, the ALS community received a devastating update from Amylyx Pharmaceuticals.
“PHOENIX Study Did Not Meet Prespecified Primary or Secondary Endpoints””
ALS is a neurodegenerative disease where nerve break down weakens muscles. Life expectancy, two to five years. No cure. If Lou Geherig were diagnosed today, he would have the same prognosis.
Dora’s diagnosis on November 18, 2019 was a death sentence. With no money, minimal equipment and no famity support, we navigated the 100% fatal disease lane. I was her only caregiver. We were offered Riluzole, a medication that wouldn’t cure the disease, a medication we couldn’t afford. We weren’t referred to an ALS clinic, we weren’t given guidance on navigating the healthcare system, we weren’t given a voice in her care. She passed away 76 days after diagnosis.
In February 2022, I testified before the FDA in favor of AM0035. When Relivryo was approved, I was frustrated to learn that Veterans and people with more money than me and Dora, couldn’t access it.
Though the Amylyx update is disappointing, I will continue advocating for a cure.
After Amylyx ALS trial failure, patients share disappointment and fear — but some hope
https://www.statnews.com/2024/03/12/amylyx-als-drug-trial-fails-relyvrio-patients-react/
The Amylyx trial outcome is disappointing. After losing Dora, my partner of 23 years, 76 days after diagnosis, I was beyond devastated. With no money, minimal equipment and no legal ties to one another, we navigated the 100% fatal disease alone. Shortly after her death, my advocacy work began.
On the day I tested before the FDA in favor of AMX0035, Dora’s sycamore tree fell as a result of storm force winds. My hope was that this drug would keep people - my friends - alive while research for a cure continued. Testifying alongside me that day - now deceased, Becky Mourey and Sandy Morris.
The trial outcome was disappointing and I was not expecting it. As a person living under the poverty line, I was very concerned about drug pricing. Unfortunately, I’ve accepted when you can’t afford basics like food and clean water, access to promising therapies are out of reach. It breaks my heart that these therapies are also unavailable to affluent, middle class families, and Veterans.
The outcome of this trial is just one of many devastating realities people living with and or impacted by ALS face on a daily basis. A successful trial does not mean access for all. The path to accessing Relyvrio is not an easy one. Veterans fight for access. And with this failed trial, those who are taking the drug are now facing a reality without it.
Developing a drug to cure ALS is as challenging as the disease itself. A wheelchair doesn’t cure ALS. The right type of bed, a remodified home or an accessible van doesn't cure ALS. Money, race or class does not cure ALS. The impact of ALS on the body, the family, the spirit, is grueling, relentless, haunting.
So, what do we do? We keep going. With our emancipated bodies, broken hearts and broken spirits, we stand together and demand to be a part of the ALS drug development process. If we fail, we get up again and again. If Lou Gerhig were diagnosed today he would still have the same prognosis - death.
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