The Ukrainian government has allocated Hr 300 million ($11 million) in the recently passed 2022 budget for the purchase of various expensive medicines, including the world’s most expensive drug, Zolgensma, which treats SMA – spinal muscular atrophy.
This is the first time the government allocated funds for the purchase of SMA treatment, after months of advocacy from the activists and affected families.
SMA is a rare genetic disease that damages nerve cells in the brain and spinal cord, impairing the children's ability to move, swallow, and breathe.
Zolgensma, one of the drugs used to treat SMA, is a one-time injection that costs over $2 million. At the moment, more than 200 Ukrainian kids require Zolgensma treatment.
“The most important thing for these children is time and immediate treatment, and our task as parliamentarians is to not put this problem on the shoulders of parents so that they don’t know where to find $2 million in a short time, but so that it is a matter of the state,” said Ukrainian lawmaker Ivan Krulko in September.
Back then, Krulko has pushed for the allocation of Hr 675 million ($25 million) for SMA treatment. He stressed that many countries around the world have state-funded programs for the purchase of Zolgensma, and Ukraine must follow suit.
“The right to life must be given [to these children]," Krulko said, so that they "live and help build the Ukrainian state.”
In spring this year, a Ukrainian family crowdfunded over $2 million in just 80 days to treat their newborn son, who was diagnosed with SMA. Thousands of Ukrainians, volunteers and public figures participated in the social media campaign, aimed to save the baby’s life.
Then six-month-old Dmytro Svichynskyi received the life-saving shot in the U.S. on July 16, 2021.
Dmytro’s parents, Vitaliy Svichynskyi and Maria Svichynska, went off to establish a social media campaign to continue helping other children diagnosed with SMA.
Vitalii congratulated the SMA-affected community with the passed law, and thanked the lawmakers.