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- Stop the blood: patients with hemophilia risk their lives due to non-administration of drugs
Stop the blood: patients with hemophilia risk their lives due to non-administration of drugs
Since the beginning of 2025, there have been drug delivery disruptions in nine regions, which may threaten the lives of patients, the All-Russian Hemophilia Society told Izvestia. These medicines are included in the state program "14 high-cost nosologies", that is, they are purchased at the expense of the federal budget. The drugs that are needed to immediately stop bleeding are not being given, which is fraught with life-threatening conditions, experts have noted. The Ministry of Health confirmed that the need for these medicines has not been fully closed, and noted that auctions were announced, but not a single application was submitted for participation in them. About why manufacturers and suppliers do not participate in tenders and why the shortage of these drugs is dangerous for patients is in the Izvestia article.
Which regions do not have drugs?
Since the beginning of 2025, patients with hemophilia (a hereditary disease associated with impaired blood clotting) from at least nine regions have complained that they are either not being given the prescribed drugs or that their dosages are being reduced. We are talking about the Moscow, Saratov, Tver, Orel, Smolensk regions, Tatarstan, Bashkiria, Perm and Krasnoyarsk territories. The All-Russian Society of Hemophilia has sent a letter to the Ministry of Health with a request to resolve the situation with the availability of medicines (Izvestia has it).
Patients say that they are denied access to medicines with the active ingredients "coagulation factor VIII", "coagulation factor IX", "simoctokog alpha" and "coagulation factor VIII + Willebrand factor". All of them are purchased under the state program "14 high-cost nosologies" and are provided to patients free of charge. Purchases of such drugs are financed from the federal budget.
"The interruption of drug therapy or a significant reduction in dosages in patients with hemophilia can lead to tragic consequences and negates all the achievements and results of previous years," the letter emphasizes.
Elena, the mother of a child with hemophilia, told Izvestia that they have not received the drug since April of this year.
"We contacted the local Ministry of Health," she said, asking not to disclose her region of residence. — They first told us that the necessary drug would be available after the May weekend. But then they changed the data and said that the medicine would arrive in the region no earlier than June 10. But they still haven't given us the drug.
Elena said that for some time they used the remnants that the family had accumulated during the treatment of the child for therapy, but they also ran out.
— It's the holidays, all the children are playing in the yard. My child has to stay at home. Any scratch can turn into a tragedy for us. And the main problem is that you can't buy the drug at a pharmacy. Besides, we live on a pension, we wouldn't have enough money for it. One package of the drug costs about 10 thousand rubles or more. And it's only enough for a month," she stressed.
The woman also said that a similar problem had already occurred in the region about two years ago.
"Back then, my brother shared his medications until they were resumed," Elena noted. — Now she and the child are taking different medications.
Another adult patient from another region told Izvestia that he had an operation scheduled for July. After it is carried out, he will need a larger amount of the drug than is needed now.
— My remaining medicine will last until the end of June at the most. His absence may lead to the disruption of my operation," he stressed. — After it, my need for therapy will increase. Now I take the drug twice a week. And after that, during the recovery period, you will need to drink it every day.
What is the danger of a break in treatment?
Drugs that have been disrupted are necessary to immediately stop bleeding, said Yuri Zhulev, President of the All-Russian Society of Hemophilia.
— If the bleeding is not stopped in a timely manner, the destruction of articular tissues begins: inflammation, swelling occurs, cartilage and bone surfaces are damaged. Repeated hemorrhages in the joints lead to chronic pain, loss of mobility and disability," he added. — In children, this is especially dangerous, as normal physical development may be disrupted.
For people with blood clotting disorders, many familiar everyday situations can be dangerous. Even a scratch from a pet cat can be fatal, added Ekaterina Demyanovskaya, a doctor and expert at the Hemotest laboratory.
— Blood clotting is a complex process that helps a person not to lose too much blood with minor abrasions and wounds. It is regulated by the thrombosis system and special clotting factor proteins. If they do not work correctly, clotting may become excessive or, conversely, insufficient," she noted.
In the first case, according to the doctor, the person will have a tendency to increased thrombosis. In the second case, bleeding will occur, which, without medical help, can sometimes lead to fatal outcomes.
Why are there interruptions?
Izvestia sent a request to the Ministry of Health with a request to confirm receipt of the letter and the presence of drug disruptions, as well as to inform what measures are planned to be taken to resolve the current situation. No response had been received at the time of publication. But the All-Russian Society of Hemophilia provided the editorial staff with the response of the Ministry of Health to their appeal.
"For 11 assortment items of drugs for the treatment of hemophilia, the need has not been fully met," says the document signed by the Department of Regulation of the circulation of Medicines and Medical Devices of the Ministry of Health. "In order to meet the full demand for these medicines, the federal center conducted auctions, which did not take place due to the lack of bids."
According to the analytical company Headway Company, 57 auctions for these drugs were published in 2025. Of these, the last one was completed on March 31. Further, 13 consecutive tenders are in the status of "placement cancelled" due to the fact that not a single application has been submitted for participation in them. In particular, the last auction was announced on May 23, 2025, with scheduled auctions for June 2, but no one came to it.
The Department of Regulation of the circulation of medicines and medical devices of the Ministry of Health reported that they had received information from manufacturers and suppliers: they do not participate in procurement procedures due to low initial contract prices.
"The resumption of further supplies is possible only after the completion of the procedure for re—registering the maximum selling prices in the direction of an increase and the production of the volumes of medicines necessary for delivery," the agency said in a response.
Currently, the maximum selling prices for "blood clotting factor VIII" and "blood clotting factor IX" have been announced for re-registration, the department said.
Izvestia has asked suppliers and manufacturers of drugs to confirm this information, but so far they have not responded. Nevertheless, it follows from the response of the Ministry of Health to patients that in April 2025, Pharmieks (a supplier of medicines and medical products) supplied hemophilia drugs to the regions free of charge. It is not specified which ones and to what extent.
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