Hope Blooms: New Treatment Transforms Alopecia Areata Struggles for Local Teens
After they lost their hair, they found their voices. Now, two local teens and their families want to raise awareness about a lesser-known treatment for the condition that once robbed them of their self-confidence.
At age 15, Luke Campbell hid his hair loss under a hat.
“I started getting more and more bald spots for about six months, and I never thought I’d completely lose everything,” he said.
But Campbell recalls losing self-esteem and gaining social anxiety.
“It’s tough leaving the house looking like that,” he said.
Matthew Riccardi was just 11 years old when he was diagnosed with the same condition: alopecia areata, an autoimmune disorder that targets hair follicles. Much like Campbell, the then-sixth grader received topical treatments, but nothing helped.
“It was frustrating, and it was mentally draining going doctor after doctor after doctor,” Riccardi said.
Riccardi’s mother, Jamie, witnessed it all.
“We would read on the internet, one person said rub garlic on your head, take gluten out of your diet, stop eating pasta, crazy things (because) you’re desperate and you are seeing your child suffer, so you want to try whatever you can,” Riccardi said.
Thankfully, the two families found support and a promising treatment, all thanks to a savvy dermatologist, Dr. Brett King.
“I was aware of what at the time was very preliminary science from a mouse model of alopecia areata showing that this brand-new class of medicines called Janus kinase inhibitors reversed alopecia areata or grew hair in this mouse,” King said.
It did the same in humans, even though the drugs were more commonly used to treat rheumatoid arthritis.
“It changed the world forever for people living with this condition and their families,” King said.
In patients with the hair loss condition, their own body mistakenly attacks the hair follicles. JAK inhibitors work to tamp down the overactive signals between the immune system and follicles. Eventually, normal hair growth resumes.
“I was nervous about taking a drug because at the time, there were no JAK inhibitors approved by the FDA; they were still in experimental use, and am I going to put an off-label drug into my child?” Jamie Riccardi said.
While both boys regrew their hair, they may have to take the drugs for the rest of their lives to keep it.
“After four-to-six weeks, we started to see peach fuzz and my hair started to grow,” Riccardi said.
Added Campbell: “I started having hair on my eyebrows and eventually my whole eyebrows came in, and it was another six months before I started having hair on my head.”
Dr. King said it’s beautiful to restore normalcy to people and their families, and in the process, restore wellness and mental health.
Still, cost is a factor. Jak inhibitors range between $30,000 and $70,000 annually.
“The doctor has to talk to the doctors at the insurance company and you have to get thru the first hurdle of them denying it and you have to go through the process, but that’s what Dr. King did, he took this on and he sent them articles and talked directly to the doctors from the insurance companies, and once that was done it was covered,” said Bridget Campbell, Luke’s mother.
It’s a fight Luke and Matthew hope others can avoid. The teens took their success stories to the nation’s capital to lobby for faster access to effective treatment.
“They really encouraged me to talk to Brad Schneider and encouraged me to talk to other people who have this disease and who don’t have access to these other medications,” Luke Campbell said.
“I’m back to my normal self when I was before this, but I still remember what it was like, and I don’t want people to suffer, so I feel like it’s very important that I advocate for this,” Matthew Riccardi added.
The annual national Alopecia Areata Conference takes place this week in Chicago. Dr. King will be on hand to discuss JAK inhibitors.
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