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16:46 26 May 2021

What to do with SMA? "Kids, We'll Make It" campaign launched in Ukraine after Svychynskyi family's success

The campaign "Kids, We'll Make It" is launched in Ukraine after the success of the Svichynskyi family fundraising.

Rubryka reports referring to Vitalii Svichynskyi.

"#KidsWe'llMakeIt will be a new slogan of our advocacy campaign, which will be aimed at systematically addressing the issue of treatment of children with SMA in Ukraine. Together we can achieve any results, which we proved by the example of a charity fundraising to treat our son Dmytro," he said. 

The organizers offer the following ways to solve the problem:

1. Purchasing medication, Risdiplam or Spinraza, registered in Ukraine, for 90 children of 1-2 SMA types, in 2021, by concluding controlled access agreements or other ways. The approximate cost is UAH 400 million

2. Developing a comprehensive long-term program to support children with SMA, which will provide funding for:

Purchasing medication for people of all SMA types;
Introducing early neonatal screening of children for SMA in maternity hospitals; UAH 150 million;
Establishing reference centers, on a territorial basis, for children with rare orphan diseases, where they'll work with multidisciplinary teams of doctors.

3. Developing a national protocol for the treatment of children with SMA (currently non-existent).

4. Forming an electronic register of patients with SMA.

5. Introducing mandatory family information about possible genetic risks that could lead to the birth of a sick child.

6. Negotiating with Roche to extend the Risdiplam early access program, which expires in July 2021. Currently, 58 families in Ukraine receive free treatment under this program.

7. Negotiating with Novartis, the developer of the gene therapy drug Solgensma on:

Registration of the drug in Ukraine
Purchasing Solgensma drug for the state budget

"I believe that #MoH will not ignore our proposals and shortly, we'll move to close cooperation. I ask the media for information support. Together we'll have time to save the children," Svichynskyi said.

Earlier, the Svichynskyi family from Odesa announced the closure of fundraising for the treatment of SMA.

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