Despite its status as Russia’s richest region, Moscow refuses to treat adult patients with spinal muscular atrophy (SMA). In official documents, Moscow doctors call it “inexpedient” to prescribe effective drugs to adults suffering from this disease. On the basis of such conclusions of the Moscow hospital, the Moscow Department of Healthcare denies patients the drugs that the hospital with federal status has prescribed for them.
Patients with advanced disease told DW how they lose their last strength in courts with officials.
Moscow does not recognize the appointment of a federal hospital
In the last days of 2021, German language tutor Yekaterina Bochkova is awaiting trial with officials from the Moscow health department. At the end of November, she already lost her claim in the court of first instance and filed an appeal. The Muscovite is trying to challenge the refusal of the Department of Health to provide her with risdiplam (trade name – “Evrisdi”). This medicine was prescribed to her by the Scientific Center of Neurology (NTSN) – a federal institution subordinate to the Ministry of Health.
Ekaterina Bochkova
The appointment from the NCH was not enough for the Department of Health. He refused to give the 38-year-old teacher a free medicine because she did not undergo additional examination at the City Pulmonology Center. “I need to be further examined – that was the answer, – says Ekaterina. – Although this (pulmonology. – Ed.) has nothing to do with my illness at all. Therefore, I was immediately aimed at the judgment. “
Most adult patients with spinal muscular atrophy living in Moscow do not have the money to buy expensive drugs. Risdiplam costs about 25.5 million rubles a year. In Moscow, it was decided that just a diagnosis and prescription of drugs from the NIC is not enough to provide patients with drugs at the expense of the budget. Now the Department of Healthcare sends them for “additional examination” not to the pulmonology center, as before, but to the recently created Center for Orphan and Other Rare Diseases on the basis of Hospital No. 67. This practice does not exist in any other region, lawyers and patients say.
After “follow-up” all are denied medicine
None of the patients is in a hurry to get to this center. First, they believe that prescription from the federal NIC is sufficient to provide them with medicine, and the law does not provide for additional examinations. Secondly, according to their stories, the center for rare diseases is not equipped for visits by “wheelchair users”. Finally, thirdly, they are sure that the invitation of the Department of Health to undergo an additional examination is just a trick in order to save budgetary funds by issuing a certificate about the “inexpediency” of expensive treatment.
Oleg Vasiliev
39-year-old programmer Oleg Vasiliev was diagnosed with type II SMA when he was one and a half years old. Now he is also trying to get a cure from the Moscow Department of Health. The medical commission of the Scientific Center of Neurology concluded that he was shown lifelong treatment with risdiplam. Nevertheless, Vasiliev received a call from the district clinic and said that “only the council of the orphan center has the right to prescribe medicine.” He refused hospitalization, and the dezdrav refused him free medicine.
In Moscow, according to unofficial data, 38 patients with SMA. Eight of them agreed to a “follow-up examination,” and all eight were denied prescriptions for medication, although they had an appointment from the federal center, Vasiliev said. Lawyer Farit Akhmadullin, who represents the interests of Vasiliev and other patients with this diagnosis, shared with DW one of the conclusions of the center.
“The appointment of drugs for pathogenetic therapy is impractical due to the impossibility of ensuring the pathogenetic effect of these drugs on the course of the disease,” the document says. “The Moscow Department of Healthcare came up with the idea of poking needles at people. They call it needle electromyography,” the lawyer explains.
Choosing between life and budget?
But drugs such as risdiplam are not prescribed to restore muscle, but to stop the development of the disease, the lawyer argues. In other words, these drugs prolong life, although they do not return the lost functions.
Farid Ahmadullin
“Therefore, the federal center looks at the patient’s condition, decides what can help, and the Moscow center puts the patient’s health and money on the scales,” Akhmadullin said. “And for some reason, the health department always outweighs the money.”
The Moscow health department did not respond to Deutsche Welle’s request for the purpose of examining patients who already have an appointment for free medicine from a federal institution at the Orphan Disease Center. Farit Akhmadullin believes that this center was created by the Moscow authorities on purpose – to be able to refuse treatment.
“Moscow officials cannot influence the decision of federal specialists,” the lawyer states. He explains that in other regions, the authorities refuse to prescribe free medicines to adult patients – but there the courts side with the patients.
Patients find it harder to fight
Ekaterina Bochkova tells DW that she has no hope of an appeal, that she will appeal the next refusal to higher authorities. But this confrontation comes at a great cost. “We don’t give up, we go further, but all this takes time and nerves, and the strength is less and less, – she complains. – It would be a great burden for a healthy person, but I am already completely exhausted both physically and mentally.”
Oleg Vasiliev, the father of a two-year-old daughter, is also going to continue to fight for the medicine. “But if all this drags on for years, I will not be sad,” he adds. “Because life itself is beautiful. It would probably be a shame if we lived for a thousand years, and I was released for 50 years. And so – I have lived half of my life and I think I have lived well enough. “
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