A breakthrough has been made in ALS through a new drug treatment. However, frustrations have arisen, as the drugmaker priced the medication at $158,000 annually, making it difficult for many to get.
The drug Relyvrio is produced by Amylyx Pharmaceutical and has been found to slow the process of ALS, which on average claims the lives of those diagnosed within five years. ALS brings a gradual loss of muscle control, as patients eventually lose the ability to walk and even talk as the disease progresses.
Due to the price of the drug set by Amylyx, insurance companies have locked it behind a hefty application process, and the drug sometimes becomes too expensive even for patients who have coverage, the Associated Press reported.
Relyvrio is only the fifth ever ALS drug treatment approved by the FDA, making its high price tag even more devastating as patients have few other options and none as successful as Relyvrio. It is also the first approved since 2017, USA Today reported.
Neil Thakur, the chief mission officer of the ALS Association, called attention to the process, saying that it doesn’t make sense to have such long processes when patients are already on an accelerated timetable.
“When someone’s lifespan is measured in months, making people go through these multiple rounds of review is just cruel,” Thakur said, Fox News reported.
The drug was produced by combining a liver treatment drug with a supplement often found in traditional Chinese medicine. Both ingredients are not considered to be expensive.
But even still, the drug has been labeled at its astronomical price because the company said it experienced a lengthy approval process through the FDA. The AP reported that the drug company plans to make a $450 million profit on the drug.
Members of Congress and President Joe Biden have discussed legislation that would look to lower drug costs through government regulation, helping put a cap on big pharma.
However, not all are on board, including Senate Minority Leader Mitch McConnell, who said last July that government interference would not help but hurt those who are sick.
“The American people know that government can’t magically make things cost less by passing laws saying things should cost less,” McConnell said. “The invoice will be delivered to the American people who are living with actual health challenges.”
Even still, Relyvrio was approved by the FDA in September after data from Amylyx’s trials showed that those who took the drug lived longer than those who did not.
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