INDIANAPOLIS (WISH) — A mother’s fight for her son’s medicine is not in vain. She thinks she wouldn’t have been successful without the help of News 8.
This isn’t just any medicine. It costs more than $2 million, but it can mean a lifetime of difference for Anthony Schmitz.
“I feel like I’m counting the days until his funeral, not his first birthday,” said Anthony’s mother, Louise Johnson. “I don’t want to do that. No mom wants to do that.”
Louise can count on one hand how many times she has been able to hold her baby, just about five times in Anthony’s life of almost 4 months.
He’s now on the seventh floor at Riley Hospital for Children in the pediatric ICU.
When he was just a few days old, a doctor told her and her fiance, Derek Schmitz, it would be fine to let Anthony die.
But Louise would have none of that.
She points to a photo on her phone of Derek and her four boys, Anthony as well as three other sons ages 16, 11 and 7.
“Our first family photo,” said Louise. “This is my whole world in one picture.I just want to bring Anthony home so we can have more pictures.”
Now it seems she’ll get that chance, which didn’t seem as likely when that photo was taken just two weeks ago on Dec. 20.
But Anthony is a fighter.
He was born at Riley on Sept. 4 because he needed his aortic valve replaced. Louise had been making monthly trips up to Riley from their home in Evansville once her doctor realized something was wrong in the spring.
On the day of the heart surgery, Sept. 9, when Anthony was just 5 days old, the results of the newborn screening came back. Louise and Derek found out Anthony had SMA1, a severe form of spinal muscular atrophy.
“We were scared. We didn’t know what SMA was,” said Louise. “I cried all day. That’s all I could do was just cry.”
According to Cure SMA which supports patients affected by spinal muscular dystrophy, SMA is the number one genetic cause of death in infants. It affects about 1 in every 11,000 births.
There’s never a good time for such devastating news, but it happened in the waiting room after they just found out the great news that Anthony wouldn’t need two more heart surgeries.
The neurologist told her, “it was ok to just let him pass peacefully,” recounts Louise. “I knew that wasn’t an option. If there was a treatment, we were going to find it.”
There are actually two treatments.
One is called Spinraza. Louise said it requires patients get spinal fluid replaced every four months. It’s a painful process costing $750,000 annually. She’s talked to other mothers whose children have to be put under anesthesia because they won’t sit still due to the pain.
The other is called Zolgensma. It’s genetic therapy which works to replace the missing genetic material in motor neuron cells, which otherwise die. Only one dose is needed. It just takes one hour, but it costs $2.1 million.
Louise said it was just approved in 2019 by the FDA for all children with SMA under 2 years old.
“It’s a child’s life. It’s not a price. It’s not a number. It’s a baby,” she said.
Baby Anthony remains very, very weak. He has very little head control and cannot breathe on his own.
“He is one of the worst of the worst cases,” said Louise.
She’s got a few photos during those rare occasions she’s been able to hold Anthony.
“Amazing, he is the happiest, but he’s the sweatiest baby ever.”
Her fiance Derek is a manager at a fast food restaurant in Evansville and isn’t offered insurance by his employer.
Neither was Louise who stopped working when she became pregnant with Anthony.
So Anthony is on Indiana Medicaid. Louise thought Zolgensma would be approved without a problem like it is for many private insurers, but got a letter of denial in late November because Anthony is on a ventilator.
“That’s all he needs. He can live forever. So we really need that medicine,” said Louise. “It’s priceless, I just want him to live.”
That’s also around the time she realized the neurologist who had brought up the possibility of letting Anthony die hadn’t submitted paperwork on Zolgensma as early as she requested.
That’s when she requested and received a new neurologist.
She appealed the decision to Indiana’s Family and Social Services Administration which oversees the state’s Medicaid program on Dec. 5.
She sat down with News 8 on Dec 27, two days after Christmas. For weeks she hadn’t heard anything from FSSA.
Her plea to them was, “please save my baby. Save all the SMA kids. They all need it.”
We contacted FSSA that night. With the holidays, we were told we’d get a response Thursday Jan. 2.
But on Tuesday, New Year’s Eve, everything changed.
Doctors got word, the Zolgensma had been approved.
“I was ecstatic. I can’t believe it,” said Louise.
She never gave up the fight, but admits in her heart had come to terms with the most likely outcome and had given up hope.
“Yeah,” said Louise with a nod.
Her message to other parents in a similar fight, who feel like they’re counting the days till a funeral, not a birthday, “don’t give up. Call them every day. Bug them. Keep appealing.”
As for Anthony, no one is sure what effects the drug will have.
Everyone responds differently, especially with the delay of several months in Anthony’s case.
But now there’s more hope for more family photos and not just in a hospital room, for Anthony to walk, to swing, to play with his brothers and even just to breathe on his own.
“I think when NewsChannel 8 called them last week and told them they were going to do a story, I think that reversed it,” said Louise.
She tells News 8 some needed bloodwork was done Thursday and she hopes the Zolgensma treatment will happen sometime next week.
With her permission, FSSA could confirm to me that Anthony’s appeal was granted.
They released this statement to News 8:
“With any prior authorization denial the Office of Medicaid Policy and Planning may opt to utilize an external reviewer if an administrative review is requested. Through this process it was determined that the child met prior authorization criteria for this treatment. Riley Hospital for Children has been made aware of this determination.”
We followed up with asking the agency about why the ventilator requirement was lifted in this case and if that will be lifted for parents like Louise in future cases.
This is the response they released on Monday:
“We have not changed our criteria. All requests for prior-authorization are considered individually. To date Indiana has approved the administration of this drug in three children. This child will be the fourth. The cost of the treatment is not a factor in our prior authorization criteria. Indiana Medicaid, by law, makes available all FDA approved drugs except those specifically excluded from coverage. The criteria used for prior authorization is based on clinical evidence only.”
It’s a fight involving Zolgensma that has happened in several other states as well, including one highly publicized case involving a boy named Axel Dennis where U.S. Sen. Bill Cassidy even got involved by writing a letter to the Louisiana Department of Health Medicaid Services.
Louise is thankful that Indiana is one of the few states which now screens for SMA.
Anthony was approved by Medicaid for Spinraza and received the initial four treatments already. It would have require coming back for treatment every four months for life to get another dose with a price tag of $125,000 each.
Because of the flu restrictions in place at the hospital, it may be months before Anthony’s brothers get to see Anthony again.
Because Louise and her family live in Evansville, she’s been staying 28 days a month at the Ronald McDonald House down the street from Riley. One special part for her is that she used to volunteer at the location in Evansville but tells News 8 she never knew what it meant for families until now.