BALTIMORE (WJZ) — Patients with ALS, amyotrophic lateral sclerosis, go through what is often known as a death sentence. There is not yet a cure for the disease and for some time, there was only one drug that relieved symptoms.
There is a new drug called Radicava available that offers some hope. However, it is not an easy one to access.
Fang and Richard Yang, have been married for over a decade. In 2015, neurologists diagnosed Richard with ALS. Even though the disease is often looked at as a death sentence, Fang says they believe they can do what they want with their lives while they have the time.
Richard, however, does have access to Radicava. He said that within a short time after taking the medication, he could already tell a difference.
“I feel 50 percent less of the muscle twitching. I think its working right now,” he says.
Since the medication is so expensive, many patients are not able to get their hands on it.
Dr. Justin Kwan, co-director of the University of Maryland Medical Center’s ALS clinic, says he has 100 patients, but only two are getting Radicava.
“I would love for more of my patients to get this medication,” said Dr.Kwan.
While insurance companies are not making it easy, people are still pushing to make the drug more available.
As for Fang and Richard, hope is something they cultivate. Not letting ALS stop them, the couple has traveled to Australia and New Zealand this year.
“Me, Richard, and the wheelchair,” said Fang. She feels that every day is brand new.
“If we live our lives with a positive attitude, everything is possible.”
Richard hopes that in the future, the impact of ALS for him can be reversed. “That would be awesome,” he says.
Fang and Richard will be at the Canton Waterfront on Sunday morning at 9 a.m. joining hundreds of others at the Walk to Defeat ALS.