Insurance stops covering medication for Spokane family of child with rare genetic disorder

January 17, 2018 8:13 PM

Drew Reeves

Posted: January 17, 2018 8:13 PM

Updated: May 14, 2021 1:47 PM

by Drew Reeves

Insurance stops covering medication for Spokane family of child with rare genetic disorder

SPOKANE, Wash. — A Spokane family says their insurance is no longer covering a medication their child desperately needs to live.

Jamison is seven months old and was born with an extremely rare disorder called Harlequin Ichthyosis. His family must treat him with an over-the-counter ointment called Aquaphor. His entire body must be covered every couple of hours.

Aquaphor was covered by the family’s insurance for the first six months of Jamison’s life, but starting January 1, they got a letter saying that was going to change.

The Aquaphor is critical for Jamison’s well-being. Without it he could die. And his mother, Alicia Kay, must cover his body in it about every two hours.

“His skin could crack and bleed and dry out, and they could become so dehydrated that he could not make it,” Kay said.

And Jamison’s care doesn’t stop there. He also requires ear medication, reflux medication, four daily breathing treatments, three daily baths, three hours of physical therapy throughout the day, and a bleach bath twice a week to prevent infections.

“The parents have to do very meticulous skincare, pretty much around the clock, every hours to two hours,” said Samir Keblawi, Jamison’s doctor.

But Alicia says it’s all worth it, because just getting Jamison here was a miracle. Seven months into a very difficult pregnancy plagued with health issues, Alicia got the news no parent should ever hear.

“The doctor sat down and she looked at all of us and she said, ‘I’m so sorry, but this baby isn’t going to live. He has a two percent chance of survival.’ I just felt numb,” said Kay.

But the doctor was wrong. Two months later, she gave birth to Jamison, alive. Jamison is one of only a handful of people in the U.S. who have Harlequin Ichthyosis, and the only child in the Inland Northwest.

So when Alicia got a letter saying Aquaphor was no longer covered under her insurance plan, it was more than she could bear.

“From already going through so much for Jamison with the pregnancy and him being here to getting a letter like that, that he’s potentially not covered anymore. That was really, really hard,” said Kay.

Now, she hopes anyone will be able to help.

“Just by watching this, just reach out,” said Kay. “Give me support, give my family and I support, and lead me to a better insurance plan or something. Because this isn’t working and I’m not going to stick with this one.”

Alicia says they have enough Aquaphor for about another week and a half. After that, they’ll have to pay out of pocket for each jar, which only lasts them about a day and costs about $15, which means an added $450 a month for Jamison’s family.