Therapeutic wandering: patients with bowel disease left without support

In at least 12 regions of Russia, patients with short bowel syndrome (SBS) are not given the parenteral (intravenous) nutrition and medical products they are entitled to, the patient organization Wind of Hopes told Izvestia. For patients who are not treated in hospital, they should be purchased at the expense of regional budgets. Local ministries and health departments explain the refusals by the fact that the need for such products was formed last year, so the stock taking into account the increased demand was not enough. Local ministries and health departments also refer to the lack of budget funds. About where and why there were interruptions - in the material of "Izvestia".

Where they do not give food

Patients with short bowel syndrome faced a shortage of vital medical nutrition and medical devices to it, told "Izvestia" general director of the patient organization "Wind of Hope" Evgenia Birkaya.

- Now in Kaluga and Kemerovo Regions, Altai and Mordovia Republics, Primorsky and Zabaikalsky Territories, and Moscow Region, children are not given food," she said. - Adults have problems with its issuance in Moscow, Irkutsk and Arkhangelsk regions, in Krasnodar Krai and Bashkiria.

SCC is a rare disease in which a patient can lead a normal life only if nutrition is given intravenously. According to international studies, the incidence of SCC is approximately 1-5 per 1 million people, depending on the country.

At least 617 children and 200 adult patients with short bowel syndrome live in Russia, said Evgenia Birkaya.

Short bowel syndrome develops when a person lacks most of the small intestine, gastroenterologist Andrei Yakushev reminded Izvestia. According to him, the length of the small intestine is from 3 to 10 meters depending on age. But, the expert noted, in patients with short intestine syndrome it reaches only a meter, and sometimes - less length.

- In the small intestine, the main absorption of proteins, micro- and macronutrients, and all nutrients takes place. When the intestine is absent, the absorption area is reduced and they do not enter the body. This leads to a severe condition, which has a detrimental effect on all organs and systems, reduces the quality and duration of life, - said Andrei Yakushev.

Evgenia Birkaya said that specialized therapeutic nutrition is prescribed to patients by a medical commission.

- And parents of sick children and adult patients apply to the regional ministries of health with its protocols, where they receive refusals, after which they apply to the courts, - she said.

In the regions, specialists are not sufficiently oriented in the problem of CCM, so they refuse to issue the necessary treatment, believes Dina Rybina, head of the enteral nutrition and rehabilitation department with intensive therapy group of the Federal Research Center for Nutrition and Biotechnology.

- Doctors in the regions are trying to minimize the appointments of therapeutic nutrition, which are provided, among other things, from federal institutions. They cite the risk of liver damage as an argument for refusal," she said.

Why they don't give out nutrition

As one of the patients, a resident of the Krasnodar region, told Izvestia, the local Ministry of Health refused to issue him therapeutic food and medical products to him, indicating that the ministry would consider the possibility of purchase "with the necessary financial support."

"The Ministry is looking for the possibility of attracting additional financial resources to provide groups of the population and categories of diseases, in the outpatient treatment of which medicines and medical devices are issued on doctors' prescriptions for free," - also said in the response of the department, which was familiarized by the editorial board.

"Izvestia" sent inquiries to all 12 ministries and health departments of the regions where, according to patients' data, meals are not issued, with a request to confirm or deny the problem, as well as to inform how much money for providing patients with meals is budgeted and how many patients they are designed for.

The Moscow Health Department responded that "all disabled children who are medically prescribed therapeutic nutrition in outpatient appointments are provided with the necessary amount of nutrition". But the situation with adult patients was not clarified.

"To determine the annual need for discounted medicines for the next year, the application campaigns start annually in March-April," the department said. - This allows to carry out procurement procedures for the next year in advance and to form the necessary stocks for uninterrupted supply of medicines to patients".

Izvestiya" also has at its disposal a response from the capital's department to one of the SCC patients who complained that he did not receive therapeutic food. He was told that it was "prescribed to patients upon admission to a medical organization to provide medical care in inpatient conditions", i.e. in hospitals.

The Ministry of Irkutsk Oblast responded to the appeal of one of the patients with an evasive answer - that they "purchase medicines according to the basic requests of medical organizations for people who have the right to receive them free of charge".

Dina Rybina stressed that without specialized therapeutic nutrition patients with short bowel syndrome may develop metabolic disorders and secondary immunodeficiency states.

- Also, due to excessive bacterial growth, infectious complications may occur, up to sepsis," she added. - Other complications include osteoporosis. The condition develops due to calcium and vitamin D deficiency. This leads to decreased bone mineral density and an increased risk of fractures. Still without nutrition, patients can face anemia due to a deficiency of B vitamins and iron.

All these factors, the expert concluded, increase the risk of mortality. According to her, lethality from the disease in Europe and America, where it is better studied than in Russia, ranges from 11 to 37.5%.