New parents left stunned over $2 million price tag for baby’s life-changing medicine

The medicine could be a game changer, but it’s not cheap. In fact, it’s the most expensive single-use drug in the world, costing more than $2 million.
Updated: Jun. 16, 2021 at 8:09 AM CDT
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OCEAN SPRINGS, Miss. (WLOX) - Having a baby, especially for the first time, is a life-altering experience for anyone. For an Ocean Springs couple, those moments of joy and exhaustion adapting to life with a newborn have been intermingled with anxiety and concern after their son was diagnosed with a genetic condition.

Hali Saylor and Joseph Delia welcomed their son Crew into the world on May 6. Just two weeks later, their worlds changed forever.

Hali Saylor and Joseph Delia welcomed their son Crew in May 2021.
Hali Saylor and Joseph Delia welcomed their son Crew in May 2021.(Facebook)

”We brought him home initially, and we were just thrilled and excited and scared at the same time to have a newborn,” said Joseph Delia, who is a nurse. “We’re trying just to get the ropes of that, and two weeks into it, we got the diagnosis and it was just earthshattering for us.”

Crew was diagnosed with Spinal Muscular Atrophy, more commonly referred to as SMA. It is a rare genetic neuromuscular disease that slowly kills motor nerve cells in the body, making sitting, standing, walking, and even breathing and swallowing difficult, if not impossible. It is the number one genetic killer of infants under the age of two and affects one in 11,000 babies that are born each year.

Even with the odds stacked against them, the young couple got to work. They discovered that the FDA recently approved a drug called Zolgensma, which targets the genetic root cause of SMA by replacing the function of the missing or nonworking SMN1 gene with a new, working copy of a human SMN gene. The drug is specifically designed for children under the age of two and the earlier a child receives it, the higher their chance of living a relatively normal life.

Posted by Hali Saylor on Thursday, June 10, 2021

While Zolgensma could be a game-changer, helping baby Crew to live a normal life, it’s not cheap. In fact, it’s the most expensive single-use drug in the world, with one dose costing $2.1 million.

Crew’s parents were stunned by the cost of the drug.

“How is it possible to put a price tag on our baby’s well-being when this drug is a LIFE-SAVING treatment? It is SO unfortunate and saddening that our healthcare system seems to work against us when help is needed most,” Saylor wrote in a Facebook post.

“Once we got (Crew) on the insurance, we had to go through all the hurdles of finding out if they would even cover the medication,” said Delia. “If they would, how much would they cover?”

The couple took to social media, where their story soon went viral. With people sharing their posts all over the country, the family raised thousands on GoFundMe in just a few days’ time.

Posted by Hali Saylor on Thursday, June 10, 2021

”It is definitely a humbling experience, knowing everyone has come together for us and for Crew,” said Saylor.

The whirlwind experience took another turn this week after the couple learned that the insurance company will be helping to defray the cost of the drug.

“They are paying for the medication for my son to have the opportunity to walk, and to crawl, to hold his head up, to breathe on his own and to eat on his own. To me, that’s just amazing,” said Delia.

Wanted to give a HUGE thank you to every single one of you for your comments, shares, messages, donations, and prayers!...

Posted by Hali Saylor on Tuesday, June 15, 2021

Crew’s mother believes this is just the start. Crew’s condition, the expense of the drug, and the outpour of support are now inspiring her to help other parents who may find themselves in the same situation.

“We cannot let the energy stop,” said Saylor. “There will be research opportunities. Everything is growing in the SMA community. We want to start doing fundraisers with SMA to raise money in the community and raise awareness of (Crew’s) diagnosis.”

Posted by Hali Saylor on Thursday, June 10, 2021

The family wants to thank all those who have supported and shared their story over the last few weeks, stressing that this is just the start.

“It is definitely not the end, but it is a brighter beginning,” said Saylor.

Crew will receive the one-time IV infusion Wednesday and, while he will live with Type 2 SMA for the rest of his life, the medication should give him the chance to have a typical childhood.

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