New ALS treatment gives Heartland woman hope


One Heartland woman hopes a new treatment can help maintain her quality of life.

Every 90 minutes someone is diagnosed with Amyotrophic Lateral Sclerosis (ALS) according to the ASL Therapy Development Institute.

It is a devastating and incurable disease, but a new treatment now available to patients could help improve their quality of life.

This new drug is not a cure, but tests showed that it slowed down the progression by over 30-percent.

“My left leg and foot would like drag,” Beverly Johnson said. “Well, I didn’t go to the doctor at immediately you know because it was getting better I thought. I’ve never been sick in my life.”
Little did Beverly Johnson know that a trip to the doctor and several tests would change her life forever.
Beverly was diagnosed in July with Amyotrophic Lateral Sclerosis, better known as ALS or Lou Gehrig’s Disease. 
Not even a month after her diagnosis, Beverly found out about a new groundbreaking treatment for ALS.
“This is the first thing that’s came out in 22 years I was told,” Johnson said.
She’s the first in the Heartland to receive the drug. 
It’s called Radicava and administered through an infusion.
It’s an 8-week treatment cycle with two weeks off between each round of infusions.

The cycle then repeats. It’s a grueling treatment Johnson would receive the rest of her life.
“I don’t feel as tired maybe,” Johnson said.
Doctor Andrew Godbey with St. Francis Medical Center is overseeing Beverly’s care.
“The hope is that it will decreases the progression of ALS,” Dr. Andrew Godbey said.
He says this new drug is huge for those fighting the nervous system disease. It was just made available to patients in August.
“Right now the study shows it was just a 6-month trial,” Dr. Godbey said.  “So it’s just starting to come out and see and have more data on it.  Over time we’ll see how our patients fare.”
At this point, there is no telling what this drug could mean for patients long term.
Dr. Godbey says there are only two FDA approved treatment for ALS and Radicava is one of them.

The gives patients another option for care, but with the drug begin so new the drug companies are still trying to figure out who they are going to pay for

“The drug itself is about $146,000 a year,” said Dr. Godbey.
Some insurance companies won’t cover it, leaving patients unable to afford it.

Johnson said she feels lucky.
“They have not blocked it,” Johnson said. “My insurance was right on it.”
While Johnson will have to continue this treatment for the rest of her life, she is optimistic and wants to encourage others.
“Mainly just to maintain what I have and able to do what I’m doing right now for myself,” Johnson said. “Don’t give up. I’m sure there will be a lot of people getting this. It just takes time.”

Beverly only started this treatment at the end of August.

The drug was only tested in patients early in the disease process, but the FDA opened up the drug so all patients with ALS.

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