Imagine a 12-year-old girl whose love for dancing is overshadowed by a painful spinal curve, and now her family's plea for life-changing surgery is being denied by insurance because it's deemed "too new." This heartbreaking struggle highlights a bigger battle in our healthcare system—where cutting-edge treatments clash with cautious coverage policies. But here's where it gets controversial: is the fight really about safety, or is it delaying access to better care for kids like Vivian? Let's dive into this story and uncover the twists that most people miss, including why insurers dig in their heels and what doctors are saying about the future of spine surgeries.
It's December 4, 2025, and Anne Marie Hukriede has fought tirelessly against her insurer's refusal to fund her daughter Vivian's scoliosis operation. After three appeals, Aetna's response remains unchanged: the recommended procedure, vertebral body tethering, is viewed as experimental due to insufficient long-term data on its safety and effectiveness.
The latest denial arrived on November 11, mere days before Vivian's scheduled surgery. With costs potentially soaring to $100,000 if paid out-of-pocket, the Hukriede family had no choice but to delay the procedure. Hukriede, residing in Centennial, Colorado, has now exhausted all appeals. And here's the ticking clock that adds urgency: the ideal time for this surgery is during childhood growth spurts, as it corrects the spine while the body is still developing. For girls, these peak growth periods typically span ages 10 to 14, making every delayed day a missed opportunity.
"It's incredibly disheartening and frustrating," Hukriede shared. "It stirs up anger too—we shell out hefty premiums expecting coverage for essential treatments." To help beginners understand, scoliosis is a condition where the spine curves abnormally, often detected in teens. About 3 million cases are diagnosed yearly, according to medical studies. Most are mild and symptom-free, but moderate to severe scoliosis can cause back pain, breathing difficulties, and limited mobility. For Vivian, whose spine bends like a question mark, simple activities like sitting in class or participating in dance competitions—her passion—are agonizing. "There are so many things I can't do easily because of my back," Vivian explained. "I really hope this surgery will make dancing much smoother for me."
With dance season kicking off in January, the Hukriedes took action by suing Aetna on Monday in a Colorado district court, urging the company to reverse its decision and cover the surgery.
Aetna responded in a statement, emphasizing its dedication to "supporting physicians in patient care decisions grounded in the best evidence, such as peer-reviewed research and current clinical guidelines." The company didn't comment on the lawsuit when contacted by NBC News.
The surgery in question, vertebral body tethering (VBT), is a promising approach. It entails attaching a flexible cord, or "tether," produced by Highridge Medical, to the vertebrae along the curved spine. As the child grows, this tether gradually straightens the curve by slowing development on one side while encouraging it on the other. For those new to this, think of it like guiding a young tree to grow straight with a gentle support system—non-invasive and preserving natural motion.
The FDA greenlit this tether in 2019 for kids with progressive idiopathic scoliosis, weighing that the potential benefits surpassed the risks after reviewing clinical data. Many experts endorse it for growing adolescents, allowing time to reshape the spine. Organizations like the Scoliosis Research Society and the Pediatric Orthopedic Society of North America urge insurers to cover it. Yet, Aetna and others persist in labeling it experimental.
In Vivian's situation, Aetna's experts determined VBT falls outside standard care for a 12-year-old with scoliosis, citing higher complication rates and poorer outcomes than traditional posterior spinal fusion. That classic surgery employs rods and screws to rigidify the spine, but it can restrict movement and harm healthy discs, leading to future pain or more operations. In contrast, tethering aims to maintain flexibility, avoiding disc degeneration. Both surgeries involve a 2-3 day hospital stay, though recovery from tethering is often quicker.
The tether's downside? Its flexibility means it may snap over time, with estimates suggesting about 20% of patients need a follow-up fusion or replacement surgery. But here's the part most people miss: four surgeons not connected to Vivian's case defended VBT's track record, noting evolving insights help pinpoint the best candidates, making benefits clearer with experience.
"It's a sad moment when an ideal patient for this can't access it," remarked Dr. Daniel Hoernschemeyer, a pediatric orthopedic specialist at the University of Missouri Health Care, who speaks for Highridge and contributes to its education programs.
Surgeons describe a pattern of insurers lagging on new treatments, with many dedicating hours weekly to disputes over VBT denials. This mirrors broader U.S. healthcare debates, like recent Congressional gridlock over Affordable Care Act subsidies that sparked a 43-day government shutdown in October. Surveys reveal 42% of Americans find healthcare costs hard to bear even with insurance, per KFF.
All interviewed surgeons advocate wider VBT coverage. "We've published over 100 studies on outcomes, so I no longer see it as experimental," stated Dr. Mohammed Alshareef, a pediatric neurosurgeon at Children's Hospital Colorado. "Insurers tend to be cautious with novel devices, craving long-term data," he added.
Dr. Amer Samdani, a pediatric neurosurgeon at Shriners Children’s Philadelphia, noted VBT shines for lower-spine curves and active kids valuing mobility. However, limited hospital offerings stem from training needs and insurance hurdles. "Insurance is the main obstacle," said Samdani, who earns royalties from the device due to his role in its development. "At our center, initial denials hit 90-95% of cases."
Interestingly, Aetna recently covered VBT for a 14-year-old in California after an independent review deemed it necessary; she underwent surgery three months ago.
FDA approval drew from a 57-patient study, with 43 showing significant curve improvement after two years. A follow-up by Samdani reported no major issues, though one patient needed fusion and seven required a second tether for overcorrection.
A smaller 2024 study of 29 patients over five years averaged a 64% success rate—below spinal fusion's typical benchmark—but doctors attribute this to early cases and improved patient selection today. "The worst outcome is it fails, leading to fusion," Samdani explained. "If successful, it preserves motion, reducing pain and issues later in life."
And this is the part that sparks debate: Should insurers prioritize long-term data over timely access to FDA-approved innovations? Or is their caution protecting patients? What if we consider that denying coverage for "experimental" treatments could stifle medical progress, leaving families like the Hukriedes in limbo?
What are your thoughts? Do you side with insurers' caution on new procedures, or should they embrace faster coverage for promising options? Is this a symptom of a broken healthcare system? Share your opinions in the comments—we'd love to hear differing views!
Aria Bendix is the breaking health reporter for NBC News Digital.
Patrick Martin is a producer in the NBC News Health & Medical Unit.
Kate Snow is a senior national correspondent for NBC News and an anchor for NBC Nightly News.
