The Power of Collective Action in Providing Insurance Coverage for Spinal Muscular Atrophy Gene Therapy – Patient Worthy haldol

Two weeks ago she received the singular infusion of the haldol im 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 haldol im seconds, after just one week, she could sit for 53 seconds.

The best part is this treatment is a one time haldol im infusion. It’s called zolgensma and it was just approved by the haldol im FDA last may. In other words, maisie will now continue to progress without having to receive haldol im an injection every 4 months (her previous treatment was spinraza). Not only is having to receive treatment that frequently time haldol im consuming, it is painful and uncomfortable for children to have to haldol im 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?

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 haldol im 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 haldol im and money for the extensive travel they had to make haldol im for their daughters treatment. The period following the initial diagnosis was extremely difficult for haldol im the family. They ended up losing their home and they were struggling haldol im 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 haldol im each child they are fighting for are provided and then haldol im volunteers go to work to ensure their voice is heard. They also contact reporters on twitter and various news outlets haldol im to spread the word. Volunteers aren’t given a specific script to follow, but each expresses the same sentiment in a polite and haldol im courteous way.

Maddy bruce has especially high stakes in this approval process haldol im because she turns 2 years old in less than one haldol im 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 haldol im 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 haldol im not agreed to the therapy. His physician argues that the FDA approval was based on haldol im the response of the treatment in children younger than 6 haldol im months (despite the fact that it was approved for children 2 haldol im and under). His family is confident that the injection could help their haldol im son and maisie’s army is hard at work speaking to news outlets haldol im and sharing the family’s story. The dellamaggiora’s have only been in contact with the group for haldol im one week and they say the response has been swift haldol im and amazing. Looking forward

Maisie’s mom has made over 200 phone calls advocating for haldol im access for different children. She says that she thinks speaking to insurers on the haldol im 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 haldol im everyone is hoping the same will occur for lincoln and haldol im maddy as well.

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