Yulia Samoilova turned to the President of the Russian Federation.
In her address to the President of the Russian Federation, Vladimir Putin, Yulia Samoilova touched upon the acute problem of refusals to the adult population with a diagnosis of SMA. She emphasized that the current situation is sharper than it seems and requires the president's personal intervention.
Full text of the appeal
“Good afternoon, Vladimir Vladimirovich! I have a problem". Isn't that usually the case - do they start appeals to Putin? I just did it once, but the question of the life of dozens of people with disabilities forced me to take this almost extreme step again. Therefore, good afternoon, Vladimir Vladimirovich ...
Of course, you do not have to solve all the minor issues in the country, but on one topic you are obviously misled and you need to
Your personal intervention. In our country, not everything is good with drug provision, no matter what you are reported looking into the eyes.
If the Circle of Kindness Foundation removes the need for expensive drugs for children, then your subordinates in the Ministry of Health are breaking the positive dynamics for the adult population.
I inform you, our President, that Dozens of adult citizens diagnosed with SMA cannot receive medicine, either through the Ministry of Health, or through the courts, or through rallies.
Of course, I do not think that you should personally hand the Risdiplam into our hands, or even deal with this issue at all, but there is no one else to turn to in our state. You know, Vladimir Vladimirovich, the guys write to me every day, every day they report that their condition is worsening, and I am scared, scared for myself, for them. And I don't know what else to do.
You recently named the main enemy of Russia - poverty. I would also add the bureaucracy of officials to the execution list. After all, it was they, the medical officials, who sarcastically said to the disabled, “Go to Putin for medicines!”. Respectfully yours, Yulia Samoilova, citizen of Russia.