Sarah Turnbull and her daughter, Stella, along with caretaker, Shelly, stand alongside the pond at Morrison Park in Coralville on Tuesday, July 11, 2017. Within the first year of her life, Stella developed progressive muscular atrophy (PMA), a rare condition which affects the lower motor neurons, qualifying her for Medicaid under the pre-existing conditions clause. The Turnbull family relies on insurance to pay for Stella's healthcare. With the AHCA still a topic of debate in Washington, the future of Medicare and Medicaid are still unsure. (Ben Smith/The Daily Iowan)

Soyer: Wellmark, don’t deny Spinraza to those who need it


The first-ever treatment drug for spinal muscular atrophy is approved, but insurance companies won’t cover it for those who could benefit most.

By Hannah Soyer

Imagine if a cure for cancer were discovered and insurance companies decided that they would only cover this treatment for people in the early stages of the disease. Those with Stage 3 or 4 cancers would be left to either pay for this new miracle drug out of pocket or die, even though they are the ones who would benefit from it the most.

Surely we can all agree that this is absurd, especially if there was no question that the drug would help them, regardless of how serious their cancer was. Well, there has yet to be a cure for cancer, and so insurance companies have yet to pull this heartless move. However, for those with spinal muscular atrophy that rely on ventilators to breathe, this is reality.

On Dec. 23, the FDA approved the first-ever treatment drug for SMA. Babies who were in the clinical trials for Spinraza went from not being able to lift their heads to being able to sit completely unaided, even crawling and making steps. Young adults who have received it have noticed increased lung function and arm and leg strength.

One in 2,000 babies are born with SMA, including me and Stella Turnbull, who was featured in a Daily Iowan story about potential cuts to Medicaid on July 13. Stella is 9 and has a more severe form of SMA than I do; being ventilator-dependent is one of the things that goes along with this.

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Wellmark Blue Cross Blue Shield, the primary insurance that Stella’s family is under, changed its exclusion criteria recently to include those who are dependent on ventilators. Not only does this make no logical sense (how one breathes does not affect how Spinraza works its magic, according to neurologists and medical professionals familiar with the drug), it is also devastating and frustrating for Stella and her family.

“After a decade of fundraising for various drug programs that could provide a treatment for my child, it’s tough to sit back at the mercy of the drug and insurance companies while my child gets weaker,” said Sarah Turnbull, Stella’s mother.

On Wednesday, I met with a pediatric neurologist at the University of Iowa to talk about what the next step is for me to receive Spinraza. Right now, things are unknown, because it must be administered through a spinal tap, and my spine was fused to a titanium rod when I was 8 to stop my scoliosis from worsening.

But here’s the deal. The progression of SMA for me is relatively slow, and while I certainly would benefit from Spinraza, my life doesn’t necessarily depend on it, at least right now. For Stella, though, there’s a lot more on the line and a lot more to be gained. With increased lung function, she’d almost certainly get sick less often. She’d likely be able to drive her wheelchair and operate her iPad switches more effectly, leading to more independence. Maybe the muscles in her face would strengthen enough for her to be able to smile again and give her more clarity in her voice. It’s criminal that an insurance company such as Wellmark Blue Cross Blue Shield would refuse to cover a drug that would allow Stella to do this.

The fact is, Stella deserves this drug, as does everyone whose progression of SMA will be stopped or reversed.

“While Wellmark may view a child on a ventilator as one with no quality of life, I would like them to come hang out with Stella as she goes to school or a friend’s roller-skating party with all her equipment in tow,” Sarah said. “She loves her life, and she wants Spinraza because she wants every opportunity to be here for another decade.”

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