According to a story from True Viral News, anyone who has tried to get something done through governmental means are probably familiar with getting rebuffed and redirected at every turn. A term for this situation is “stonewalling,” when government affiliates speak as if they are ready to help you, when in fact they are actively trying to delay your progress. Sadly, the situation for amyotrophic lateral sclerosis advocates is no different, and a group of patients is planning a non-violent direct action outside of the US Food and Drug Administration’s (FDA) headquarters in Maryland.
About Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis ranges from two to four years, but some patients can survive for substantially longer. To learn more about amyotrophic lateral sclerosis, click here.
Not Enough Progress
The action will primarily be a rally that is being coordinated by a group of patients that have met primarily via Facebook. The group is not associated with any formal organization, and many of them have never attended a political protest. These patients feel that the lack of progress on amyotrophic lateral sclerosis treatment or research has left them no choice but to make their voices heard. They say that despite the viral ice bucket challenge that raised $115 million, progress on research and drug development has been too slow to save lives.
The group is already getting attention from senators, FDA officials, bioethicists, and the ALS Association. The patients says that they were partially inspired by the protest group ACT UP that advocated for solutions to the AIDS epidemic in 1980s, when the government failed to address the crisis caused by the illness. The protesters are have a list of experimental drugs that they want to see gain approval. While it is unclear what the result of the rally will be, some FDA officials have expressed interest in meeting with patients and drug makers to discuss a path forward.
