Health officials have confirmed that Cayman will begin screening newborns for spinal muscular atrophy, just over a week after 11-week-old Violet Fitzgerald who has the potentially deadly condition, received a $2.2 million drug to halt its progress.
The government, through the national insurance company CINICO, paid for Violet to be administered the gene therapy drug Zolgensma, which is considered the most expensive medication in the world.
After the Compass highlighted Violet’s case and approached the Health Services Authority to query if Cayman would be adding spinal muscular atrophy to the dozens of genetic conditions new babies are screened for, a government spokesperson confirmed in a statement on Wednesday afternoon, “The Medical Director’s office has instructed the addition [of] newborn testing for Spinal muscular atrophy (SMA).”
Acting Medical Director Dr. Courtney Cummins said that the overall incidence of SMA is frequently cited as being about 1 in 11,000 live births. “However early treatment prior to the onset of symptoms provides the best outcomes,” he said.
Since 2016, therapies that can improve the course of the disease have emerged and have shown promising results, he noted.
The addition of SMA to the screening will mean an extra cost of $6.50 per test, the spokesperson noted.
Violet’s mother, Brooke Fitzgerald, said she was delighted that Cayman would be adding SMA to newborn testing.
“This is really, really amazing news,” she said. “Although the chances of another baby being born in Cayman anytime soon with SMA is extremely rare, this SMA newborn testing will be life-changing for the next baby and their family.
“We would give anything to have known Violet had SMA when she was born because her qualify of life after treatment would be so much better. SMA babies who receive treatment right after the newborn screening are reaching age-appropriate milestones and walking.”
The gene therapy drug does not reverse the effects of SMA, but it can halt them, so the earlier a child receives the drug, the better.
Violet was diagnosed with spinal muscular atrophy at seven and a half weeks old. She was tested for the condition at five weeks, after her parents noticed that her arms were moving oddly.
Fitzgerald, in a message to the Compass from Philadelphia, where the family is staying for three months while Violet undergoes follow-up checks and physiotherapy, said, “Although we are staying positive and Violet is a fighter, looking at it realistically, our family is preparing ourselves for her not being able to walk in the future. We are hoping she will be able to sit up and hold her head up but even that is uncertain at this point.
“It is [essential] SMA babies get treated as soon as possible.”
She added, “This is life-changing news. This is really, really incredible for parents and their future babies born in the Cayman Islands.”
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