According to a story from The Intercept, Ady Barkan’s life is slowly slipping away as his amyotrophic lateral sclerosis continues to progress. Despite this, Ady has developed a reputation as a political activist and tireless advocate. Recently, he lost his ability to talk, but that didn’t stop him from appearing before Congress last week to speak in support of healthcare reform.
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.
Ady’s Story
Ady first made headlines about a year ago when he confronted Senator Jeff Flake because of his support for the GOP tax reform legislation. He also started his own political action committee that was focused on targeting lawmakers that supported that plan.
At the event before Congress, Ady was able to communicate with his audience thanks to a special device attached to his wheelchair. This device uses a messaging system that Ady can control with his eyes. This allows him to select the words that he wants, and once he has finished putting together a message, the device then repeats the phrase with an automated voice.
Ady made three points to explain why he supports Medicare for All. First, he says that it will improve access to healthcare for all Americans, including people with serious rare diseases like amyotrophic lateral sclerosis. Prompt care and diagnosis is often essential for these patients if they are going to be effectively treated. He also argues that such as system would bring significant savings in cost for both individuals and for the nation as a whole. Ady also believes that a Medicare for All system would save time for patients thanks to improvements in efficiency.
His decision to advocate is based on his own experiences seeking medical care. He is burdened with tremendous expenses: he currently pays $9,000 per month for treatment even with help from his insurance.
Ady’s activism is an example of how a rare disease diagnosis doesn’t have to hold anyone back or eliminate their ability to make an impact on the world.
