The Power of Collective Action in Providing Insurance Coverage for Spinal Muscular Atrophy Gene Therapy

Maisie Green

Maisie Green is a 20-month-old little girl whose insurance has finally approved coverage for a life-altering spinal muscular atrophy treatment.

Two weeks ago she received the singular infusion of the therapy and she has already had noticeable improvements. Her mother explains that while previously she couldn’t sit up on her own for more than 9 seconds, after just one week, she could sit for 53 seconds.

The best part is this treatment is a one time infusion. It’s called Zolgensma and it was just approved by the FDA last May. In other words, Maisie will now continue to progress without having to receive an injection every 4 months (her previous treatment was Spinraza). Not only is having to receive treatment that frequently time consuming, it is painful and uncomfortable for children to have to deal with. Additionally, Spinraza costs 125,000 dollars per injection making its annual cost 375,000 dollars. Thankfully, most insurers do cover this option; however, in the long run, is this in their best financial best interest?

Granted, Zolgensma is priced at 2.1 million dollars. However, it is only needed one time and most importantly, it can significantly improve both patients outcomes and their quality of life.

Initially, Maisie was denied coverage of Zolgensma by her insurance company. But “Maisie’s Army,” a group of 700 dedicated advocates, fought to reverse that decision over a 2 month campaign. Now Maisie’s family is using the army formed for them to help others receive the treatment they need.

The group was created by Maisie’s parents over a year ago. Their initial goal was to raise both awareness for SMA and money for the extensive travel they had to make for their daughters treatment. The period following the initial diagnosis was extremely difficult for the family. They ended up losing their home and they were struggling financially. The group not only provided them monetary support, it became a collective voice for Maisie’s fight.

Ongoing Work of Maisie’s Army

How does Maisie’s Army work? They utilize social media, they contact news outlets, and they phone insurance companies. Email addresses and phone numbers for the insurance companies of each child they are fighting for are provided and then volunteers go to work to ensure their voice is heard. They also contact reporters on twitter and various news outlets to spread the word. Volunteers aren’t given a specific script to follow, but each expresses the same sentiment in a polite and courteous way.

They communicate through Facebook and their work spans the U.S. The group has a night and a day crew to ensure that the communication is continuous and insistent.

In Maisie’s case, her mother set up an in-person meeting with her insurance representatives because she wanted them to look her daughter in the eye and then deny her the coverage.

The success stories have been flowing in. Currently, two children the army is fighting for are still without coverage, but they aren’t giving up the battle.

“Their success is a reflection of not only the effectiveness of public pressure campaigns but also of the stakes for families.”

Stories of The Fight

Here are some stories from patients who are benefiting from Maisie’s Army.

Estelle Lemieux

Estelle Lemieux received approval for Zolgensma just 3 days after the denial thanks to Maisie’s Army. Her family was in utter disbelief and full of gratitude at the decision.

Estelle’s mom explains that just knowing they had the support of the group made her feel better.

Maddy Bruce

Maddy Bruce has especially high stakes in this approval process because she turns 2 years old in less than one month. Zolgensma is only approved for SMA patients 2 and younger.  Maddy has been denied multiple times because it is “not medically necessary.” She has been given Spinraza since she was only 2 days old and the treatment has helped her. But like other patients, she hates receiving the injection. The singular treatment could completely change her quality of life.

Lincoln DellaMaggiora

Lincoln DellaMaggiora is 15 months old. His insurance has denied him Zolgensma because his physician has not agreed to the therapy. His physician argues that the FDA approval was based on the response of the treatment in children younger than 6 months (despite the fact that it was approved for children 2 and under). His family is confident that the injection could help their son and Maisie’s Army is hard at work speaking to news outlets and sharing the family’s story. The DellaMaggiora’s have only been in contact with the group for one week and they say the response has been swift and amazing.

Looking Forward

Maisie’s mom has made over 200 phone calls advocating for access for different children. She says that she thinks speaking to insurers on the phone makes each story seem more real, more human. She is able to use inflection to portray her desperation. So far, this method has made an impact on numerous families and everyone is hoping the same will occur for Lincoln and Maddy as well.

This collective action clearly expresses the power in community effort to make a change. Especially in the rare disease community, we have more power as a whole when we work together.

You can read more about these children’s stories and Masie’s Army here.

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