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- Easy ways: in 54 regions, people with cystic fibrosis do not receive therapeutic nutrition
Easy ways: in 54 regions, people with cystic fibrosis do not receive therapeutic nutrition
Adults with cystic fibrosis are guaranteed to receive therapeutic nutrition only in three regions of Russia, the All-Russian Union of Patients (VSP) told Izvestia. However, the organization checked the situation only in 57 regions of the federation. Adults also complain of difficulties in obtaining targeted therapy, and they have to seek it through the courts. The VSP suggested that the government consider the possibility of creating a federal program to help patients with cystic fibrosis over the age of 18. Now, after coming of age, such patients drop out of state programs. For more information about the availability of medical care for patients with cystic fibrosis, see the Izvestia article.
Where they do not provide therapeutic nutrition
A critical situation has developed in Russia with the provision of therapeutic nutrition for adult patients with cystic fibrosis, the All-Russian Union of Patients told Izvestia. After coming of age, a patient with cystic fibrosis ceases to be provided with therapeutic nutrition within the framework of the Federal Law "On State Social Assistance", but regions can make purchases from their own budgets. The organization checked the situation in 57 regions — by the European Cystic Fibrosis Day, it is celebrated on November 21.
"Adults receive therapeutic nutrition only in Moscow, Tatarstan and the Kaliningrad region,— the VSP clarified.
Cystic fibrosis is a hereditary disease that affects the endocrine glands in various organs. The disease affects the entire body, but it especially affects the respiratory system and digestive tract.
According to the register of patients with cystic fibrosis in Russia (maintained by the Association of Medical Geneticists, the N.P. Bochkov Medical and Genetic Research Center, the Ministry of Education and Science, and the Russian Respiratory Society of the FMBA Research Institute of Pulmonology), 4,058 such patients were registered in Russia by the end of 2023 (3,038 alive, 40 dead, observed this year, as well as 821 patients who were not observed in 2025, and 159 who were not examined for three years).
The total number of patients with cystic fibrosis in the Russian Federation (according to the "14 high-cost nosology Program") at the end of 2023 was more than 4.5 thousand people.
Data for 2024 has not yet been published.
Living with cystic fibrosis requires not just drug therapy, but a whole system of daily support for the body: enzymes, antibiotics, therapeutic nutrition, respiratory therapy, Irina Myasnikova, chairman of the interregional public organization Helping Patients with Cystic Fibrosis, told Izvestia.
— Many issues have been resolved now. For example, the problem of providing enzymes, although not universally. The situation with antibiotics has also partially improved, although interruptions still occur, especially in inhalation and intravenous forms," she said.
Therapeutic food for patients with cystic fibrosis is needed to compensate for the body's need for nutrients, a pulmonologist told Izvestia on condition of anonymity.
— These patients have impaired absorption of nutrients, so they have a high need for protein and fat. It is through therapeutic nutrition that they can correct the lack of nutrients in the body," she explained.
Olga Alekina, Chairman of the Board of the Moscow Region regional public organization "Assistance to patients with Cystic Fibrosis", confirmed that there is a problem with providing therapeutic nutrition throughout the country. In addition, the VSP noted that patients complained that medical commissions refused to approve the therapeutic nutrition prescribed by the doctor.
The dosage and cost of therapeutic nutrition depend on the age, weight of the patient and the need for it. On average, its cost can range from 140 thousand rubles to 300 thousand rubles per month.
However, the situation with providing therapeutic nutrition for children is far from ideal. The VSP conducted a survey of parents: only 62.4% of the parents surveyed said that they were giving it to their children. Another 24.5% indicated a lack of prescribed therapeutic nutrition.
"There are no massive problems with prescribing therapeutic nutrition to children. There are delays in the supply of medical nutrition due to the disruption of bidding, inefficient work of regional health authorities, the VSP said, but did not name the most problematic regions.
There is a list of specialized meals for children with disabilities. It is being expanded annually, Olga Alekina reminded.
— But there is no such list for adults. This is especially critical for patients without targeted therapy," she stressed.
Without therapeutic nutrition, patients with cystic fibrosis have problems gaining weight, their lung condition worsens, and the risk of death increases, the pulmonologist added.
According to Olga Alekina, most often adults seek medical nutrition through the courts.
VSP considers it necessary in Russia to have a federal program of support for adult patients with cystic fibrosis, with the consolidation of mechanisms for providing targeted therapy, therapeutic nutrition and medical products, as well as the creation of a continuity elevator between children's and adult services.
Izvestia sent inquiries to the Ministry of Health and Roszdravnadzor about whether there had been complaints from patients about refusals to issue therapeutic nutrition, as well as whether an appropriate federal program was possible.
Which drugs are not available
There are also problems with the discharge and delivery of targeted therapy to patients with cystic fibrosis, the VSP said.
"Among them is the excessive requirement for face—to—face consultations in federal centers for prescribing the drug and the need for a judicial procedure to launch targeted therapy based on indications," the document says.
The VSP emphasized that the organization of medical care for cystic fibrosis has undergone significant positive changes in the last decade due to the advent of targeted therapy and its financing mechanism.
Targeted therapy allows you to influence the cause of cystic fibrosis, rather than fight the consequences of the disease, said pulmonologist Stanislav Krasovsky.
"It improves the course of the disease by correcting the work of the gene in which mutations lead to the disease," he stressed.
The use of the target, according to the expert, makes it possible to reduce the frequency of exacerbations from the respiratory system and improve lung function. Targeted therapy for cystic fibrosis has been available in Russia since the beginning of 2021, he recalled. Prior to that, according to him, the therapy of patients with cystic fibrosis was exclusively symptomatic.
An adult patient from Moscow, on condition of anonymity, told Izvestia that she received therapy at the expense of the Circle of Goodness Foundation until her 19th birthday.
— I felt great on Tricafta medication. But after switching to an adult network, they began to refuse to prescribe this medicine. I went to court, but he didn't take my side," she said.
Yulia Zaitseva, director of the Association for the Care of Cystic Fibrosis Patients, said that this drug is not purchased under federal programs. It is not included in the state program "14 high-cost nosologies", it contains a drug based on dornase alpha for adult patients with cystic fibrosis, but it is not targeted. The Circle of Goodness Foundation buys targeted medicines for children.
According to the VSP survey, 54.4% of children and 33.9% of adults have been prescribed targeted therapy and have no problems with it.
"It is prescribed, but 9% of children and 17% of adult patients receive it intermittently; it is prescribed, but 9.3% of children and 15.3% of adult patients do not receive it," the organization said.
After the age of 18, a person actually drops out of the system: drug provision depends on the region's capabilities, and the Circle of Kindness no longer works with adult patients, said Irina Myasnikova, chairman of the interregional public organization Helping Patients with Cystic Fibrosis.
— Adults are often assigned only the third disability group, which does not reflect the actual severity of the disease and does not provide the necessary level of support. In fact, everything that children manage to keep under control is actually lost in adult practice," she stressed.
The difficulties that are particularly acute in adult patients today can no longer be solved by individual appeals — systematic, consistent work is required here, said Yan Vlasov, Co-Chairman of the VSP.
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