VIRGINIA BEACH, Va. (WAVY) – There is a continuing fight in the Virginia General Assembly to save the lives of children impacted by a deadly disease.
In December, the state rejected efforts to provide funding for the early screening of Krabbe disease, a rare neurological condition. According to the Mayo Clinic, it impacts one in 100,000 children. Critics say that’s why a Virginia Department of Health Screening Advisory Committee rejected it.
However, Delegate Jason Miyares (R), who represents House District 82, says he will not be denied.
“This was a commitment I made when this first came to my attention, and I am a man of my word, and I’m a big believer in let your yes be yes, your no is no. I promised them I would continue this fight until it gets across the finish line. Hopefully this time, with a budget amendment.”
It was a promise made by Del. Miyares to the parents of 2 ½ year old Nikola.
In a recent visit his father, Dragan Grujicic, was using a suction machine to clear Nikola’s lungs. “If I don’t do this, he could get pneumonia and kill him,” Grujicic said.
There is no cure for Krabbe disease, but if detected just after birth and within a month, and with a blood stem-cell transplant, life can be extended for years. It has to be detected in newborn screening immediately after birth. If it is not detected early, Krabbe will kill by age five.
“Every day, all day long, her care and medical needs are front and center,” said Rachel Lebow. Her 3-year-old daughter Mila has Krabbe disease.
Kasey Feldt’s son Dawson died in November. “We know he is in a better place, having fun in heaven, and that gives us peace.”
Dawson was 15 months old.
Four days after Dawson’s death, Kasey testified before the Virginia Department of Health’s Newborn Screening Advisory Committee that ended up rejecting newborn screening for Krabbe disease.
Doctors actually voted against it.
“I’m so confused why the doctors said no,” Kasey said.
Lebow was stunned by the defeat. “To bring in other doctors who opposed it and the things they said, just didn’t make sense. And I don’t know the reason behind it.”
During 10 On Your Side’s interview with Lebow, her daughter Mila had a mild seizure. Sadly, this is Mila’s life until she dies.
“If Mila had been screened at birth, and been able to receive stem-cell transplant and everything had gone well with that, Mila would not have all these complications,” said Lebow.
Which brings us back to Del. Miyares who sponsored the Krabbe Screening Bill that was rejected in Richmond. “I was disappointed last year. Governor Northam opposed my legislation, and we all were disappointed the Department of Health wasn’t willing to add this to their early screening list,” he said.
Christen Crews is a Nurse Supervisor for the Virginia Newborn Screening Program at the Virginia Department of Health.
She confirmed at birth the state experts already think it’s too late to basically save the children.
Duke University’s Dr. Joanne Kurtzberg says these Virginia experts are wrong, “By doing the transplant it slows down progression. It prevents early problems from development, particularly those in the brain.”
Dr. Kurtzberg performs the Krabbe stem cell transplants and says 22 of her patients are living normal lives. The oldest is now 24 years old.
The early screening is already approved in eight other states.
“It is a drop in the bucket in a multi-billion-dollar budget,” said Del. Miyares about the early screening funding.
Del. Miyares is determined to get that funding. He has submitted an amendment to the State Budget for newborn Krabbe screening which, as he said, is a drop in the bucket to save newborn lives.
Last year, Del. Miyares used a budget bill to fight this battle, but during the shortened legislative session this year, his strategy is a budget amendment.
The estimated startup costs for screening are $2.88 million, with estimated annual costs expected to cost less, about $2.56 million in a $67 billion a year state budget. The cost for Krabbe screening breaks down to 1/10 of one percent.
“You find out, wow, the parents think had I just had this screening at birth I could have had this massive early intervention that would have not given my baby a death sentence,” said Del. Miyares.
“She (Mila) may be able to walk and run and dance and jump and laugh and smile,” said Lebow.
Del. Miyares sums it up this way. “We are saving lives. It’s worth it! I think this is critical in this debate and this discussion.” Without a doubt, he believes it would be money well spent.