WASHINGTON - Back in the summer of 2014, the Ice Bucket Challenge took social media by storm. It was started by a young man in Boston to raise money for those suffering from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
For the first time in 22 years, the Food and Drug Administration (FDA) has approved a new drug to treat ALS. The FDA approved Radicava (edaravone) in less than a year after the application for the medication was submitted. It was not expected to be available for another two to three years, but was pushed sooner than expected. Part of the reason was due to the funds raised from the Ice Bucket Challenge.
ALS is a neurological disease that currently does not have a cure. Approximately 12,000 to 15,000 Americans have ALS and more than 5,000 people are diagnosed per year. The average life expectancy is between two and five years. Also, 75 percent of people with ALS lose their ability to speak.
“It has been described as a glass coffin, which I think is incredibly accurate,” said Andrew Berman, a member of the board of directors for the ALS Association for the DC/MD/VA Chapter. “You don't lose any mental function whatsoever, but your body slowly withers and you lose the ability to control your muscles.”
Radicava is administered intravenously by a health care professional. Patients receive a daily dosage for 14 days followed a 14-day break from the drug. The dosage cycle continues again followed by another drug-free break. Tests showed the drug slowed down the decline of people with the disease.
“Just watching this process, essentially helpless, is unbelievably heartbreaking,” said Berman. “This drug is a treatment that we are excited about and we all pray one day there is actually a cure.”
However, the drug will not be cheap. The drug reportedly costs over $145,000 a year.