Shamil Dzhemiev

9 years old, the Kurush village (the Republic of Dagestan)
Diagnossis: Primary immunodeficiency with inborn errors of IL12- and IFN-γ-mediated immunity.
Generalized mycobacterial infection with multiple bone lesions.
Council of physicians of the Federal Research and Clinical Center of Pediatric Hematology, Oncology and Immunology (FRCC-PHOI) administered Interferon as the only life-saving treatment to the boy. The drug is not registered in the Russian Federation. Its cost is 900 euros per pack (a new pack is needed every 3 weeks).
The medicine has to be provided on an ongoing basis!
A supply of Interferon for a 6-month course of treatment was purchased. The total cost was 8,404.24 euros.

Story

At just 9 years old, young Shamil already knows what it means to be a man and to endure all the hardships. Over the last 3 years the kid underwent 10 surgeries... But he has not stopped smiling!

The thing is that with his illness, tuberculosis affects the bones and joints. Without a ceaseless treatment with the drug, the disease is constantly progressing, resulting in new bone damage and consequently regular surgeries.

When Shamil was 2.5 years old, his mom noticed that he started limping, and local doctors thought that a knee massage would solve the problem… But it was much more serious… And then there were endless visits to various doctors, long hospital stays, and severe surgeries.

In 2010, the physicians administered him a drug that stopped the progression of the disease and put it into remission. Not able to walk for a year, now Shamil walks, plays games, watches cartoons, draws, and even dreams to go to the sports section.

Shamil dreams of becoming a doctor, like his elder sister, who studies in a medical school (besides, Shamil also has a twin brother and sister).

But his biggest dream is never to be confined to bed again. Just imagine what it's like for a boy to be left without a chance to go into the yard, to his friends…

Council of physicians of the FRCC-PHOI administered Interferon as the only life-saving treatment to the boy. The drug is not registered in the Russian Federation. The boy's father twice applied to the Ministry of Health of the Republic of Dagestan and the Federal Service for Supervision of Health Care (these institutions sent a letter to the Government of the Republic of Dagestan to find additional sources of funding for the purchase of the specified drug), however all appeals have failed. “The funding level does not allow the Republic to provide finance to all citizens, having a right to benefit”.

A month course of Interferon costs about 1,000 euros, family income does not allow to purchase the drug at its own expense, and the subtleties of the legislation allow to count on government support in the provision of drugs registered only in Russia.

The last surgery to remove metal constructions in the lumbar spine was performed on Shamil in November 2011, and now the boy feels well. A necessity for new operations and Shamil’s ability to walk depend directly on the provision of Interferon to him.

What has been done

A 2-month course of treatment (March and April 2013) with Interferon was paid for. The total cost was 115,993 rubles.