Local boy will receive $2.1 million drug after insurance reverses decision

Published 6:17 pm Thursday, August 8, 2019

By SABRINA BERNDT

Washington Daily News

The seemingly impossible fight is almost over, as Wade Hosey’s $2.1 million Zolgensma treatment will be covered by his family’s insurance company, Blue Cross and Blue Shield of North Carolina.

After Wade Hosey’s diagnosis of Spinal Muscular Atrophy, or SMA, in July, his family worked tirelessly to raise the funds for the new gene therapy named Zolgensma, which was considered a miracle drug for SMA patients but was not initially covered by their insurance. However, after a tense week of fundraising, the family received word that the insurance company will reverse their earlier decision to not cover the cost of the drug. The decision came after N.C. Representative Keith Kidwell met with the company’s representatives.

“While they were there, I took the Hosey case and introduced it,” Kidwell said. “I said, ‘This example right here is part of why so many people hate insurance companies. This young boy needs a prescription, they’ve paid their insurance, and they’ve jumped through just dozens of holes to try and get you to fill the prescription, and you won’t do it. That’s wrong.’”

According to Kidwell, the Hosey case was not the initial reason for the meeting, but rather the final straw after a history of personal and constituent horror stories with insurance companies refusing to fill prescriptions or switching prescriptions to more dangerous alternatives to save money.

“I actually had this with my wife, six years ago,” Kidwell said. “My wife was on a diabetic medication, and when the insurances all changed around and whatnot, they ended up saying she could no longer get this one she had been on for a long time. … I told the insurance company at that time that we got to do something to fix this, and if I ever get in a position to do so, I plan on it.”

Kidwell said he plans on taking legislative action, including introducing bills prohibiting insurance companies from forcing patients to take black-box medicine, or prescriptions that have fatal or critical side effects, and ensuring a patient receives their prescription during a preauthorization process.

“My wife was without diabetic medicine for three months,” Kidwell said. “They should never be allowed to do that. And that’s why I felt it was appropriate to fight for Wade Hosey, because the insurance companies need to stop walking all over people.”

For Nicky and Brandon Hosey, the next step is to simply wait. According to Nicky Hosey, the medicine is being shipped to the family’s doctor at the Children’s Hospital of The King’s Daughters in Virginia, one of few hospitals in the regions that can administer it, and Wade will be given the injection next week.

The family is using the donated money to cover the leftover cost of the Zolgensma injection, as well as future medical costs for Wade. Whatever is left will be donated to Cure SMA and the Gwendolyn Strong Foundation, both organizations that dedicate funds to Spinal Muscular Atrophy research and awareness.

“We’ve never seen our community rally and be together like they have for Wade,” Nicky Hosey said. “People who don’t even know him have been praying him, churches. We will never be able to thank everybody for everything that they’ve done.”