As covered in Stat and True Viral News, ALS made a name for itself in 2014 when their donations campaign, the ice bucket challenge, went viral, earning $115 million dollars for the cause. Now, the community is making noise again, this time with less hope and more anger. The community has had protests outside the FDA by supporters of fast tracking drugs to approval and allowing access to drugs in earlier phases of trials as part of the “right to try” law, which has yet to be extended to the ASL community. These protesters feel forgotten, that the FDA has not moved quickly enough to legalize medications that while not yet through all clinical trials, they believe to currently be the only hope against the terminal condition and worth trying.
The protests recently named “Contagious for a Cure”, though still small, have caught the attention of law makers, the FDA, and the ALS association, who at times, share the sentiment. The protestors efforts are part of a larger debate about the “right to try” law, a law which gave patients access to new cures that are not yet through the scientific scrutiny of trials due to the severity of their disease. These protestors feel left behind as other diseases get cures approved, and they continue waiting.
What is Amyotrophic Lateral Sclerosis
ALS or Amyotrophic Lateral Sclerosis is a neurological disease that kills nerves in the brain, brain stem, and spinal cord, progressing over time. Slowly the rest of the body loses its functions, causing the person to lose control of their muscles and eventually, lose the ability to breath as well. The disease is fatal.
Why are they protesting
The direness of the situation fuels much of this protest. When your life expectancy is ten years, time is of the essence. People with the disease know the importance of speed and feel law makers should be considerate of this and give approval priority. ALS already has three promising drugs still in trials, with the drug companies BrainStorm, Collaborative Medicinal Development, and Dr. Stanley Appel’s cell therapy each with trials underway. BrainStorms drug is closest to approval, in phase three of trials. Part of the frustration comes with broken promises, as BrainStorm’s president had promised that once the law was passed, patients would have access, only for those with the disease to see that never follow through. They also feel the ice bucket challenge with its $115 million dollar revenue was not proportioned to these drugs as they had wanted. While it resulted in an 187% increase in research and funding went towards two of the drugs which went on to discover five genes connected to the condition, protestors feel the money was not used adequately or towards what patients really want: deadlines and timelines for when the FDA will permit access to these new therapies. The protest has caught on, with top republican names in politics writing on their behalf, including Senator’s Mark Rubio, Ted Cruz, Mike Braun, and Mike Lee.
Opposers think rushing remedies could cause harm or backfire, and that their eagerness does not mean the drugs are safe for wider use. They believe if the drugs could cure those with the disease, it would be one thing, but for now, there’s no evidence that is the case. Others think the protest is misdirected towards the FDA, which only gives approval for drugs, but isn’t providing the funding or laws surrounding it.
In the end, protestors just want hope and life, and they feel these drugs may be able to give it to them. Protestors are using their voices because they feel these drugs are the hope they have to continue living.