New ALS drug treatment will cost patients $150K

Posted at 5:58 PM, May 08, 2017
and last updated 2017-05-08 17:58:51-04

The US Food and Drug Administration recently approved a new drug treatment for ALS (amyotrophic lateral sclerosis). Radicava is suppose to slow down the progression of the deadly disease.

Dr. Tomas Holmlund with Dent Neurologic Institute says people with ALS generally live between three to five years. Only 10 percent live as long as 10 years.

Dr. Holmlund said it's difficult to tell patients they have ALS. He said he has a patient who's only 19 years old with it.

"You have to deliver a diagnoses that's not easy to deliver. But youo have to do it and you have to do it realistically. You also have to do it with some hope," Dr. Holmlund said.

For Dr. Holmlund, this new drug could be that shining light of hope for patients. The drug was tested in Japan. It reportedly slowed down the progression of the disease by 33 percent. Radicava is the first treatment drug in more than 20 years and only the second ever.

Julie Garland with the ALS Association Upstate New York Chapter said this disease has gained a lot of attention since the ice bucket challenge. Tens of millions were raised for research.

"It shows folks that people are listening and people are working towards a cure and it's one step closer," Garland said.

The treatment drug is expected to arrive in the United States in August. It will cost patients $150,000 a year. Something that worries Dr. Holmlund.

"There are going to be issues because this is not a cheap treatment as of right now,"  Holmlund said.