New drug for alopecia sufferers brings hope to community

INDIANAPOLIS — Alopecia is a rare disease where your immune system attacks your hair follicles causing hair loss.

But a new drug provides hope to this community.

Josh Heaston can see his condition every time he looks at himself.

“I look in the mirror, I brush my teeth (and) I'm reminded I don't have any hair. I don't have any eyebrows and I'm sick,” Heaston said.

His reflection highlights the physical changes caused by a disease called alopecia.

“I had a perfectly shaped quarter-size circle completely bald on the top of my head,” Heaston said.

His journey started in 2011 when doctors and dermatologists confirmed his diagnosis.

“Mr. Heaston, we know what you have, we don't know how you got it, and we don't know how to treat but it's called alopecia,” Heaston said doctors told him.

Alopecia can be temporary or permanent.

It can be hereditary or caused by hormonal changes, medical conditions or simply aging.

In 2017, Heaston heard about a new clinical trial for a drug called Olumiant to treat his condition.

Led by his faith, Heaston decided to take part and in July of that year started taking the daily pill.

“I was completely bald ... no eyebrows, no eyelashes, no facial hair and things like that, and I believe about four and a half five months later, all my hair grew back in and I looked like a completely different person,” Heaston said.

But after the trial, Heaston couldn’t take the drug that gave him his hair, his confidence and his hope back.

“Within three months, all my hair had fallen out again,” Heaston said.

Olumiant is now FDA-approved and they said in the clinical study participants saw 80% or greater hair growth.

Some of the side effects of the drug include infections, fever, muscle aches, weight loss and tiredness.

Now, nearly five years later, Heaston is back on the drug and hoping for the best.

“I’ve been back on it for two weeks. I actually have a few more growing in, so I'm hopeful again and my big thing is I want to have a haircut for Christmas,” Heaston said.

Right now, Olumiant is only approved for adults.

But Heaston said he took part in the trial for kids with alopecia, hoping one day the drug is approved for them — or that at least they have something to look forward to when they turn 18.