When her newborn daughter, Aniya, was diagnosed with spinal muscular atrophy, Abilene resident Hailey Weihs learned time was of the essence.
Aniya’s diagnosis affects 1 in 6,000 children, according to Johns Hopkins Medicine. Children born with SMA have missing or non-working genes responsible for producing a protein responsible for muscle control. Without enough protein, nerve cells die, causing weak and atrophied muscles.
Aniya’s neurologist prescribed her Zolgensma, a one-time gene therapy that helps the body’s nerve cells produce protein. However, Weihs said her insurance denied the doctor’s preauthorization request because Aniya’s condition was considered mild.
Weihs spent four months on multiple rounds of appeals before receiving approval.
“We know that with spinal muscular atrophy, it’s very time sensitive,” Weihs said. “Knowing anything could happen to her at any time, that it would never be able to be reversed, that was just very devastating for us.”
Weihs and other Texans have partnered with the advocacy group Texas Coalition for Patients to share their stories and push for new health insurance policies and regulations during the 89th Texas Legislature. The nascent group consists of patients as well as health care professionals.
“The balance of influence at the Texas Capitol around health policy has been kind of seized," said Katherine McLane, TCP spokesperson, "by moneyed, powerful health insurance companies and their influence on how Texans receive care, what’s paid and what’s not paid, what’s denied, what’s approved."
The coalition lists the Texas Hospital Association, Texas Medical Association and the Livestrong Foundation among its members.
So far, the group has applauded a bill filed by Georgetown Republican Sen. Charles Schwertner. Senate Bill 815, if passed, would prohibit insurance providers from using artificial intelligence to determine whether treatments are medically necessary.
“Senator Schwertner’s bill creates some guardrails for that which are badly needed," McLane said. "We are especially grateful to the senator for getting out ahead of something that is still emerging within the insurance industry."
Transparency, peer to peers among priorities
Although prior authorization paperwork is not part of Dr. Amy Faith Ho’s job, she sees the consequences of denied or delayed requests in the emergency room.
Patients come to her who have waited for months to receive approval for diagnostic scans or treatments approved by specialists.
“By the time they come to me, it’s because the condition has gotten worse and now they require emergency surgery or an inpatient admission or sometimes even more advanced care,” the Dallas emergency room physician said.
Nearly 1 in 5 insured adults reported receiving a claim denial in 2023, according to a survey by the health policy nonprofit KFF.
The Texas Coalition for Patients has called for more transparency around the prior authorization process and explanations of benefits; a prohibition on health plans relying on third-party vendors to deny care; and a requirement for peer reviewers to sign denial letters.
Groups including the American Medical Association have described the prior authorization process as burdensome and detrimental to patient health. A 2023 AMA survey of physicians found that only 15% of health plan “peers” had appropriate qualifications to weigh the benefits of treatment.
“If they have an oncology claim and their case was reviewed by a podiatrist, they have that information,” McLane said. “They deserve to know that.”
Got a tip? Email Kailey Broussard at kbroussard@kera.org.
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