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President of Russia Vladimir Putin: Good afternoon. Take a seat, please. How are things going?

Archpriest Alexander Tkachenko: Thank you for your attention to the operations of the foundation. We have been working for nearly five years now. Of course, we are analysing our achievements and making plans for the future.

We can say confidently that the foundation has become an effective instrument complementing the programme of state guarantees, and the Russian Federation has taken the leading place in the world in terms of the accessibility of orphan products for patients with serious illnesses. No other instrument or country in the world guarantees such quick and reliable access to the most…

Vladimir Putin: …to drugs for serious illnesses.

Alexander Tkachenko: The foundation’s efforts have helped increase active life expectancy for children. Children not only come back to life but can live a life that brings joy to them and their families. I would like to tell you two stories that are touching and probably illustrative.

Anya lives in Kurgan. She is 15 and she has a serious illness, hypophosphatasia, which includes bone fractures and numerous surgical interventions.

Vladimir Putin: Fragile bones?

Alexander Tkachenko: Yes, fragile bones. The foundation provides unique medications. I am delighted to tell you that Anya has been able to return to sports and has even become swimming champion in Russia. She won six medals during the swimming championship last year.

Vladimir Putin: Good job!

Alexander Tkachenko: Another impressive story is about Kirill from the Lugansk People’s Republic. He is 13, and he has achondroplasia, a serious illness that causes dwarfism. Despite his illness, Kirill has a powerful inner strength. Although his height is only 128 cm, he can do knee bends with a barbell that weighs 115 kilogrammes. He has won 50 medals, which he has dedicated to Russia. These are wonderful stories.

It is a miracle we ourselves have performed, thanks to those who donated money to our foundation, your decision, and the activities of the Government and the Healthcare Ministry.

The foundation provides assistance to 29,000 children, supplying 117 medicines for one hundred diseases, which we send to them across Russia. There are 68 children who regularly receive such medications in the territories that have reunited with Russia.

Another significant contribution of the foundation to healthcare development is its neonatal screening programme, which began in 2023. This initiative enables the early detection of serious illnesses in children before symptoms appear. Last year alone, nearly 99 percent of newborns – approximately 1.2 million – were screened. As a result, 1,316 infants with serious conditions were identified and received prompt medical assistance, including immediate access to necessary medications.

At your request, a reserve of unregistered medications was established, allowing patients to receive vital drugs not registered in Russia within just one day in urgent situations. This level of responsiveness is a key achievement of the foundation’s work, providing parents with the assurance that treatment will be given promptly and without interruption.

Another important achievement I’d like to highlight is the fight against hepatitis C. The foundation provides highly effective medications for its treatment, with a success rate of nearly 100 percent. As a result, we have cured 2,370 children of this stigmatising disease: a truly remarkable outcome.

The foundation has established transparent and efficient operational procedures, beginning with parental requests for assistance and continuing through to the procurement of medications. The public has entrusted the foundation with significant financial resources, all of which are dedicated exclusively to purchasing essential treatments. We manage these funds with the utmost care.

Last year, the foundation received 200 billion rubles. The entire budget was effectively utilised, and medications were delivered to children as planned. In total, since the foundation began its work, it has received 511 billion rubles.

It’s important to emphasise that this has been possible thanks to the foundation’s…

Vladimir Putin: Half a trillion.

Alexander Tkachenko: Russia has a generous heart. And when it comes to treating children, we do not measure the cost because behind every case are the lives and happiness of our people.

I would like to highlight that direct negotiations with manufacturers, involving the Federal Antimonopoly Service, resulted in savings of 26.2 billion rubles. These funds are being reinvested to purchase additional medications and to finance high-tech medical treatments.

I would also like to point out an important indirect effect of the foundation’s work – it serves as a catalyst for the development of the domestic pharmaceutical industry. Many of the medications and medical products now being provided to patients are produced locally, registered, and introduced into civilian circulation.

It seems only fair that taxpayers’ money stays within the country, contributing to the growth of our own industry.

Vladimir Putin: The key is ensuring the quality is up to standard.

Alexander Tkachenko: Absolutely. Patients regularly provide feedback on their treatment, and the process is closely monitored by physicians, the Federal Service for Supervision of Healthcare, and the Ministry of Health. The effectiveness of these drugs has been clearly demonstrated.

Vladimir Putin: That’s very good to hear.

Alexander Tkachenko: Most importantly, oversight is not only conducted by the foundation and government agencies but also by patient communities themselves.

Vladimir Putin: Naturally, this is extremely important.

Alexander Tkachenko: From its inception, the foundation established procedures for transparency and social partnership. The Civic Chamber of the Russian Federation has become the platform where the foundation holds regular meetings with patients.

Patient associations literally assist us in developing mechanisms – we jointly monitor the quality of care provided and assess how regional healthcare authorities perform their duties. This too is of crucial importance.

Another achievement of the foundation that I would like to underscore. The theme of childhood garners significant media attention, and whereas prior to the foundation’s inception, media coverage often centred on pain and hardship, it now highlights hope, the future, and confidence in what lies ahead.

Last year saw 17,000 reports and publications in the media, including 132 features on federal television channels. These accounts demonstrate how families are regaining normalcy and children are leading fulfilling lives. Such openness, attentiveness to patients’ and parents’ wishes, and prudent management of resources have naturally garnered public recognition.

The Higher School of Economics conducted independent research, revealing that 85 percent of respondents familiar with the foundation express trust in its work – an exceptionally high mark of confidence.

Vladimir Putin: This is a credit to you and all your colleagues.

Alexander Tkachenko: I must confess to some embarrassment, but I wish to share words spoken by one of our patients’ mothers. She said: “Great is the nation where the President shows such care for children.” Please accept these sentiments.

I have prepared an album for you. Essentially, it contains letters and stories from parents about their children. They write about how their lives have been transformed and express gratitude to the nation for its profound commitment to children’s wellbeing.

Should you find time to read it, these accounts may serve as inspiration for further contributions to our country’s cause.

Vladimir Putin: I see the foundation’s continuous development, including new initiatives addressing orphan and other severe diseases, as well as efforts to combat these afflictions. I would like to thank you, because while adopting decisions and securing funding is one matter, organising effective implementation is another.

At the outset of this endeavour, we proceeded from the premise that this very approach would ensure success: identifying individuals who would earn the absolute trust of society and parental communities while guaranteeing that the foundation’s operations remain fully public and transparent. Only through such means can trust be achieved.

You have succeeded – both personally and through the team you have assembled – and this undoubtedly underlies the foundation’s accomplishments. For our part, we will continue to provide comprehensive support to sustain operations, maintain funding sources, and create conditions for further effective work.

Thank you profoundly. Should any specific issues require discussion, let us address them in detail.

Alexander Tkachenko: Thank you.

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