New Texas advocacy group calls for more health insurance transparency

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.

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