(Gray News) - A family fighting for a chance at a normal life for their 20-month-old son got the news they had been waiting to hear: He can get the groundbreaking medicine he needs.
Wade Hosey, his mother and grandmother were at a doctor’s appointment Wednesday when they got a call from someone at their insurer, Blue Cross Blue Shield of NC.
“She said they had an emergency meeting and decided to reverse their decision on the denial," Nicky Hosey said Thursday. "And when she told us, me and my mom were in the car together, and we lost it. We had the insurance lady crying, for God’s sake!”
Wade was confused by the tearful celebration, but he liked a vehicle that drove by.
“He just pointed to a truck and said, ‘Truck! Truck!’" she said. “He has no clue, all the people that have been fighting for him, praying for him and going to bat for him.
"But we won’t forget them, that’s for sure.”
Wade has spinal muscular atrophy, type 2, a rare genetic disease that already prevents him from standing or walking without aid. Without treatment, he would permanently lose the use of his legs over time, as well as other basic motor functions - potentially even the ability to breathe without a ventilator.
A relatively new gene treatment, Zolgensma, offered the Hoseys hope but came at the cost of $2.1 million - the most expensive drug in the world. Blue Cross NC denied their first claim, and the drug is only approved for children under 2, leaving the family with weeks to find a solution.
When Nicky told her husband, Brandon Hosey, that they were now approved, he couldn’t believe it.
“We called with the doctor, we called insurance again and got them to verify, in front of a doctor, that this was correct," Nicky Hosey said. "And (Brandon) was like, and we keep questioning, ‘Is this really reality? Has this really happened?’”
The gene therapy is a one-time intravenous dose, compared to alternate treatment that would force the child to have regular spinal injections his entire life.
Wade's neurologist at Duke Children's Hospital wrote in his insurance request that the drug could halt Wade's degenerative disorder, allowing him to gain strength in his core and legs.
Blue Cross NC stated it only received that letter from Wade’s doctor, which detailed the reasons for priority review and approval of Zolgensma, when Nicky Hosey sent it Wednesday morning.
“Our medical team looked at the individual case, reviewed the information from the treating physician, and we approved,” said Austin Vevurka, spokesman for Blue Cross NC.
A representative for the insurer declined to say whether Wade’s approval meant a change in company policy. In the initial denial, it stated in the letter the drug was only covered for children with SMA, type 1 - the most severe version - who showed symptoms before 6 months, along with other criteria.
Moving forward, Nicky Hosey said they plan to help others going through similar experiences. They want to raise awareness about early screenings for genetic disease, help parents of kids with SMA go through the insurance process, and work with SMA nonprofits, like Cure SMA and the Gwendolyn Strong Foundation.
The family’s last eight months have gone from the uncertainty of whether something was wrong, to the heartbreak of diagnosis, to the fears and frustrations that have followed since then.
Wade will be treated Sunday or Monday, depending on when the medicine arrives, his mom said.
“He’ll get an injection, and he’ll play for 90 minutes, it’s just an IV in his arm, and we go home right after,” Nicky Hosey said. "He’ll be on some steroids for a while, for a few weeks maybe. After that, there’s no telling. (The doctor) thinks he’ll walk.
“He may have a limp, but you know what? I’ll take a limp any day after what we’ve been through and after what his future could have looked like.”
The Hoseys started a GoFundMe, “Walking with Wade,” before getting approved by the insurer, and it had raised more than $45,000 by Thursday. The family updated it to say donations would help pay for additional medical expenses.
Nicky Hosey thanked everyone who has helped Wade along the way.
“It is all because of our community rallying and going out and most of the all, it’s all the prayers we’ve gotten,” she said. “I can’t tell you the amount of messages we’ve gotten ... all the people who are like, ‘We have prayed for you, your family and your son nonstop.' You mean something to my family.”
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