High needs Nebraskan families to get $10,000 stipends in new waiver
Plus: Suicide rates among young autistic kids are shockingly high; A hormone shortage and preauthorization requirements create a nightmare; Georgia parents cry out for summer care options
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Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From NPR: “Persistent shortage of growth hormone frustrates parents and clinicians”
Dr. Jennifer Miller has been an author of dozens of studies about rare endocrine diseases over the last two decades. Hundreds of patients fly to Gainesville, Fla., from all over the U.S. to see her for treatment.
But now, her office is inundated with faxes, emails, texts and phone calls that have little to do with her life's work. Miller, a professor of pediatric endocrinology at the University of Florida's College of Medicine, has research papers in her inbox that just need a few finishing touches before publication in medical journals. She doesn't have time for them.
A shortage of growth hormone — as well as how insurance companies are handling the problem — has consumed nearly every spare minute she has had for the last six months.
[…]For Miller's patients, 500 of whom have a rare disorder called Prader-Willi syndrome, it has been devastating. Without the injectable drug, they are always hungry, causing blood sugar and behavioral problems, weight gain and other complications.
"These kids are suffering. And it's not OK," she says.
[…]"People think: 'Growth hormone. Oh, big deal, right? It's for growth. Who cares if you don't have it?' But that's not the point," says Miller. "They're having actual physiologic consequences from not being on growth hormone. And to me, that's just not acceptable."
[…]To make matters worse, insurance companies are making patients and clinicians jump through extra hoops to get the drug — even during the shortage.
Most insurance companies require a prior authorization for growth hormone, meaning health care providers need to justify their prescription with the insurance company before the company will cover the drug, allowing the pharmacy to dispense it to the patient. The process can take days or weeks, which is cumbersome but at least was required only once or twice a year for most families.
Now that the drugs are in shortage, patients and doctors are chasing whatever size injection pen and whatever brand is available. That triggers insurance companies to ask for a new prescription and new prior authorization every time patients need to switch gears and ask for a different pen size because their normal one is out of stock.
[…]Hillary Hall, who lives in Las Vegas, has spent hours on the phone trying to get growth hormone for her 9-year-old son, Winston Hall, who has Prader-Willi syndrome.
"I'll get it one month, and then they're like, 'Oh, well, we're out of that pen now. Now we need a new prescription and a new pre-authorization,'" she says. "That's not just like an overnight process. It's like a couple-of-weeks thing. And then by the time they mail it out to me, you know, we're talking three weeks."
[…]"He has a hard time getting through the day without having outbursts and things like that," says his father, Jeff Hall. "They send him home because he's had a breakdown and, you know, like tearing stuff off walls."
They eventually went without their insurance and bought Winston a 30-day supply of growth hormone from Mexico for $1,400. […]
• From Disability Scoop: “Suicidal Thoughts Alarmingly Common Among Young Kids With Autism, Survey Finds”
New research suggests that more than a third of children with autism ages 8 and under have had suicidal thoughts and not all of these kids are necessarily displaying warning signs.
In a survey of 968 caregivers of kids with autism ages 8 to 17 across the nation, more than 40% reported that their child wanted to die.
The findings were even more striking when researchers looked specifically at children ages 8 and younger. Among this group, 36.2% reported wanting to die, 35.3% reported wanting to end their own life and 18.1% reported having a suicide planned.
[…]For the research, caregivers of kids with autism were asked to complete a questionnaire about mental health and suicidal behaviors between May and October 2017.
[…]The high rate of suicidal thoughts identified among young kids is particularly worrisome, the researchers said, because validated suicide risk screening tools and interventions for this age group are lacking. And, while they noted that the National Institute of Mental Health says suicide warning signs in children can include changes in behavior like extreme mood swings, withdrawing from friends and family and giving away belongings, not everyone with autism who is at risk shows signs.
[…]If you or someone you know needs help, call or text 988 to reach the 988 Suicide and Crisis Lifeline.
• From North Platte Bulletin (Nebraska): “Nebraska rolls out support for 850 families with disabled children”
As the country observes Autism Acceptance Month, Nebraska families raising a child with Autism Spectrum Disorder are among those learning they will be receiving financial assistance.
The Family Support Waiver is based on passage of a 2022 bill and will provide up to $10,000 annually for 850 Nebraska families with a child with a developmental or intellectual disability, and the child will also receive Medicaid coverage.
[…]Jennifer Clark, deputy director of the Developmental Disability Division for the Nebraska Department of Health and Human Services, said they are notifying around 150 families per month between now and August they will be receiving the Family Support Waiver. Clark emphasized the department has prioritized families by need based on their responses to a survey sent to those with a child on the developmental disabilities waiting list.
Receiving first priority are families in crisis.
“Where the child tends to self-harm or harm others, so whether they’re harming their siblings or their family members,” Clark outlined. “The second priority is children with disabilities who are at risk for placement in juvenile detention centers or other out-of-home placements.”
Clark added families in which the grandparent is the primary caregiver are given third priority, followed by families with more than one child with a disability living at home. Remaining families are prioritized based on the date they applied to the developmental disabilities waiting list. […]
• From 11 Alive (Georgia): “Clayton County parents begging for more options for special needs kids this summer”
Clayton County parents are begging county and school officials to give them more options for care for their special needs children.
School is almost out. And when there is no school, parents tell us they're struggling to find consistent places that will care for their kids while they work over the summer.
Reshma Frett, a mother to a special needs child, said the problem is bigger for them because even paying for care isn't always an option.
"Not even some of the daycares around take them," Frett said.
[…]At last week's county board of commission meeting, an advocate begged officials to take action. These parents are hoping to raise awareness of more options and relief.
"I want more," Frett said. "He needs more. He deserves more. He deserves inclusion." […]
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