ОБЩЕРОССИЙСКАЯ ОБЩЕСТВЕННАЯ ОРГАНИЗАЦИЯ ИНВАЛИДОВ-БОЛЬНЫХ РАССЕЯННЫМ СКЛЕРОЗОМ

TALKING OF PHARMACOLOGICAL SUPPORT PROBLEMS AGAIN

Solominka, №4(24), April, 2008 

Starting 2008, 60 thousand Russians suffering from diseases, being the most expensive for treatment, shall receive medicines to keep up their lives at the expense of the federal budget. The situation of medicinal support for seriously ill patients has really improved. However, the words of the authorities are hard to swallow in practice. 

 "Today’s situation isn’t that bad," says Chairman of the Multiple Sclerosis Society Yan Vlasov, physician from Samara. "Two years ago, the number of patients who received fit and adequate treatment with high-priced medicines was 3 times as less. Well, today, people with multiple sclerosis, who get adequate treatment for MS, are about 10 thousand."

According to the Samara physician, in total there are 150 thousand people with MS in Russia. At best, only one fifth can hope for adequate treatment. Meanwhile, there are no precise data regarding all people with multiple sclerosis. "Some communities live in rural areas, and the quality of health examination and care is not good enough there. Therefore, those people are out for us," says Yan Vlasov.

Far from everything is perfect regarding people with hemophilia. "The situation is like this: in some areas, people get medicines in full without fail," says President of the All-Russian Society of people with hemophilia Yuri Zhulev. "Somewhere they even increased dosages. But we were surprised to find out quite a few regions where the dosages had been curtailed."  

According to Yuri Zhulev, the patients ‘can’t understand what’s going on’. “There is no uniform procedure to dispense the medicines, there are huge problems with the register,” says the President of the All-Russian Society of people with hemophilia. “That is, we are totally at a loss about how to treat newly diagnosed people. If a tender is submitted for a six-month provision with medicines, then, the pharmaceuticals come in for the six months. If a boy is born with hemophilia, or someone is diagnosed with the disease – nobody knows what to do with him.”

“In regions, they face just the same mess,” Yuri Zhulev goes on. “We’ve got lots of regions, where they refuse to dispense medicines to patients with their disability not formally confirmed. But we mean vital medicines here, don’t we? In many areas, physicians are afraid to take the meds of a patient, who doesn’t show up to collect them, and redistribute them to another patient, who comes in the window appealing he needs the meds badly. Doctors cannot redistribute pharmaceuticals, which are within the register in effect, or dosages because of their apprehension.” 

All efforts to save budgetary funds end up in monstrous consequences. “Unfortunately, as for mucoviscidosis, for instance, they have made a one-legged decision,” says the mother of a boy with mucoviscidosis and Chairman of a public organization Irina Myasnikova. “Out of the three medicines, which are critical for people with mucoviscidosis, this programme included only one, that is pulmozyme. As to other medicines, for example, enzymes, the lack of which causes people with mucoviscidosis to die a starvation death, as well as intramuscular antibiotics being indispensable for the patients to live on, these didn’t get in this programme.”

Well, everybody does his best to get out of this. For instance, Irina and her activists hold benefit concerts to raise money for the purpose of providing people with mucoviscidosis with antibiotics.

(Radio Svoboda)

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