Texas Families Urge Lawmakers To Move Faster To Screen Newborns For Deadly Genetic Disease
FORNEY and AUSTIN, Texas (CBS11 I-TEAM) - With a newly FDA-approved treatment, doctors says the lives of nearly 100 Texas babies can be saved every year by screening newborns for Spinal Muscular Atrophy.
Some states will begin screening for the genetic disease in 2019, but Texas health officials say the steps required to begin statewide SMA screening in Texas will likely take four to five years.
Texas parents are pushing the state to find a way to start screening sooner.
Roughly, 100 babies are born in Texas every year with SMA. The disease is the most common genetic cause of death in infants.
The neuromuscular disease causes the loss of muscle use throughout the body.
Six-year-old William Moore of Forney was born with SMA before there was a treatment.
He is bedridden and the only body part he can move are his eyes. With a computer, he uses his eyes to speak.
Moore also needs saliva suctioned out of his mouth because he cannot swallow.
Most children with Moore's severity of SMA do not live past the age of two.
"He's a huge blessing," Moore's mother, Beth, said. "Our life just looks a lot different than other people's lives. My house is a mini ICU. He takes around the clock care. I wouldn't trade it but it would mean a lot to me if other families didn't have to experience it."
Due to a recent medical breakthrough treatment, other families should no longer have to.
In December 2016, the FDA approved a new treatment for SMA called Spinraza.
The treatment can be costly but doctors say the effects on patients have been dramatic and it can prevent long-term care expenses.
Spinraza costs about $750,000 for the first year of treatment and more than $100,000 every year after.
Dr. Warren Marks, Medical Director of Muscular Dystrophy Association Clinic at Cook Children's Medical Center, said Spinraza has shown to eliminate most of the debilitating and deadly effects of SMA.
He said the key, however, is treatment must start as soon as possible.
"The ideal would be literally as they come out of mom in the newborn nursery as soon as you know what is going on," Marks said. "This is a classic example of a disease that ought to be screened."
Every baby born in Texas has a blood sample sent from the hospital to a lab in Austin where the sample is tested for 53 different conditions.
SMA is currently not one of the conditions tested. Only diseases with treatments can be added to the state's list.
The Department of State Health Services has not created a cost estimate for adding SMA to the screening list, but state health officials said the newborn screening lab in Austin already has the equipment needed to test for SMA.
Once up and running, according to studies, supplies needed to test for SMA would cost an estimated extra $.07 per test.
Currently. testing for all 53 conditions costs $55 per child.
Newborn screening is typically covered by private health insurance. Texas screens Medicaid-eligible babies for free. The Department of State Health Services spent more than $57 million in 2016 on newborn screenings.
In December 2017, the Texas Newborn Screening Advisory Committee met in Austin to discuss SMA.
William Moore, his mother and other families with children suffering from SMA attended to show their support for adding SMA to the state's newborn screening list.
The committee did not make any decisions on SMA at the meeting but the Texas health department anticipates SMA will be added to the national Recommended Uniformed Screening Panel list.
SMA has been nominated to be included on the RUSP list and is expected to be added later this year.
Texas has historically tested for all conditions on the RUSP list.
However, before Texas can begin statewide screening for SMA funding must be approved by the Legislature.
The Texas Legislature does not meet again until 2019.
State health officials said even if funding is approved in 2019, the process would take at least another two to three years before Texas would be ready to start screening newborns statewide for SMA.
"It is frustrating that we have to wait but that is the process," said State Representative Nicole Collier of Fort Worth.
Collier, who serves on the Public Health Committee, said one potential option that could speed up process would be for Governor Greg Abbott to call for a special session so state lawmakers could approve the funding before the 2019 legislative session.
However, Collier said she is "not confident" that a special session will be called.
"I would definitely support a special session because one life is worth any amount of money," she said.
The CBS 11 I-Team reached out to Abbott's office multiple times in the past three weeks concerning the idea of calling a special session to approve funding for SMA screening. The governor's office has so far not responded.
"They all seem to want to help us and get this into the law but it's not moving very quickly," Beth Moore said.
Moore knows, perhaps better than most, the dramatic difference early treatment can make.
When Moore was pregnant with her second child, Mary, she had her tested for SMA.
Mary tested positive so just days after she was born she received her first treatment.
The treatment was not available four years earlier when her son, William, was born.
Mary is now two years old and shows almost no signs of the same disease that keeps her brother bedridden.
"My daughter is able to talk and laugh and express herself; and every time she does that I look at her and think I wonder what William would have been like at two," Moore explained.
"Every single day I just think is there another kid in Texas being born that has SMA that doesn't know. We are missing that opportunity."