Topic

Health

16,430 petitions

Update posted 12 minutes ago

Petition to Food and Drug Administration

Reduce the price of the most expensive drug Zolgensma that treats Spinal Muscular Atrophy!

Everyone should stand up for affordable access to a lifesaving drug!!! In May 2019, the Federal Drug and Administration (FDA) approved Zolgensma to treat newborns and toddlers up to age 2 who are born with SMA (Spinal Muscular Atrophy), which is a gene disorder. Priced at $2.1 MILLION for five years, the drug is one of the most expensive drugs to be approved. SMA Type 1, the severest form, is almost always fatal by 2 years of age, with a 50% mortality rate by 7 months, and a 90% mortality rate by 12 months. Zolgensma is too expensive to acquire even with the support of different charity organizations. Until parents find out that there is something wrong with their newborns, a few months elapse. Then until a proper diagnosis of a child is performed, several other months pass by leaving parents with little time to find adequate funds. While insurance companies may take some financial burden off parents in the US, children around the world are also diagnosed with this disorder. Because of that, the price for this specific gene therapy, Zolgensma, needs to be lowered to make it more affordable for babies that need it!!!! Right now, it's way too expensive!!! Please lower substantially the price of the drug, Zolgensma, so that families in the US and around the world can potentially be able to afford this drug for their babies! Otherwise, a lot of affected families are left without an adequate SMA drug treatment since that drug currently CARRIES A SUBSTANTIAL TAG PRICE!! SMA Type 1 is a severe type of Spinal Muscular Atrophy. A child may not be able to support their head or sit without help. They may have floppy arms and legs and problems swallowing. The biggest concern is weakness in the muscles that control breathing. Most children with type 1 SMA don't live past age 2 because of breathing problems.

ewelina salaga
170 supporters