The burden of a multimillion-dollar life-saving drug for a little girl has been lifted thanks to help from an insurance company and a Michigan millionaire.
Maisie Forrest, a 19-month-old who was diagnosed with type 1 spinal muscular atrophy more than one year ago, needed a treatment called Zolgensma to prevent the disease from progressing, according to FOX 31 Denver.
The genetic disease affects muscles closest to the center of the body, including those of the hips, thighs, shoulders and upper back. It can also affect muscles that control breathing and swallowing.
“It just takes one cold to kill them. We lost Maisie twice. We’ve had to resuscitate her two times so far in her life,” Ciji Green, Maisie’s mother, told FOX 31.
However, as with many pharmaceutical drugs today, the out-of-pocket cost of the treatment is exorbitant and would have required a payment of $2.125 million for the one-time dose.
But enter Bill Pulte, a Michigan millionaire who designed a scheme of paying anyone willing to retweet him on Twitter. On Saturday, he tweeted that he would give away $10,000 to someone random because “I feel like being nice.” Also this month, Pulte announced he would give away $100,000 by year’s end to those in need, and would up the total to $1 million if he gets more than 1 million followers on the social media platform.
Pulte met this week with the insurance panel that was reviewing the infant’s case and a day later the company, Rocky Mountain Health Plans, announced it would pay for the treatment.
“This feeling right now, I can’t describe it, knowing that my baby’s going to have a chance,” Green said in a Facebook video post, overwhelmed with tears of joy, “I’m so grateful.”
She encouraged people to continue to raise money for others with the debilitating disease, adding that a non-profit in Maisie’s name will be created to help families, “feel this incredible feeling that I feel right now.”