3 November 2010
When Lena was 3 years old she was diagnosed with cystic fibrosis. Before that no one could understand why Lena gets colds and bronchitis all the time, why she is so skinny and weak. After the correct diagnosis she had to take pills and get injections, but she started feeling better and had an almost normal childhood in between treatments.
Lena didn’t pay much attention to the fact that she has to take medicine daily. She didn’t realize that not every kid lives the same way she does. What she did realize is that she misses the most important, her mom. Lena’s parents couldn’t bear having a sick daughter and Lena went to live with her grandmother, who loves her and takes good care of her.
Recently Lena has been feeling worse. Doctors found pseudomonas aeruginosa. This infection is dangerous, because it can destroy child’s lungs in several months. After that nothing can help her, because in our country they don’t do lungs transplantation for people with cystic fibrosis. Such surgery abroad costs more that 200,000 euros. It is possible to cure the infection with antibiotic Tobramycin.
On December 31, 2009 Russian government passed a very important law. It approved the list of vital and most important medications. Patients with medically proven need are supposed to receive medications from that list for free. Lena Zaykova has the need for the antibiotic Tobramycin that shows up in that list. Chief pulmonologist of the Children’s Hospital in Sverdlovsk region Shulyak I.P. personally signed the prescription: «it is recommended to use inhalation of Tobramycin, which is on the list of vital and most important medications».
Lena’s grandmother asked Ministry of Health of Sverdlovsk region for the medication, but hasn’t received it. She asked again and referred to the law passed by Russian government. This time bureaucratic skill of delaying and postponing did its job. Bureaucrats have agreed that the new law states that Lena is supposed to receive her medication, but there is also an old decree #665 from September 18, 2006, according to which they don’t have medication for Lena. So they can’t help the girl, but can inform the grandmother that they have worked on the project of the new decree «About including changes into the Spatial program ... for 2010 to change the list of vital and most important medications according to the law of Russian government».
Lena’s grandmother could be very happy with the result, only that Lena still didn’t receive her medication, and the year 2010 that was supposed to bring all these changes is almost over. On January 1 the next year will begin and the bureaucrats will make another promise, they will «work on the project of including changes» again and refer to any other decree or instruction, just to not give the medicine to Lena.
While local bureaucrats are looking for excuses, Lena’s grandmother is looking for money to save her beloved granddaughter. One course of treatment with Tobramycin costs 273,000 rubles (8,900 dollars), which is equal to Lena’s and her grandmother’s pensions for 3 years. Therefore Natalia Valerievna (grandmother) is asking kind and merciful people for help.