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Doctors sound the alarm: the number of Russians with a terrible diagnosis of "inflammatory bowel disease" is growing annually

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Unfortunately, the treatment of patients with inflammatory bowel disease (IBD) is hardly available today.

Expert - Head of the Department of Gastroenterology and Hepatology, GBUZ MO Moscow Regional Clinical Research Institute M.F. Vladimirsky ", chief gastroenterologist of the Moscow region, co-chair of the Russian Society for the Study of IBD Elena Belousova.

There are many problems in patients faced with these severe chronic diseases. And there are enough white spots in the legal regulation of medical care for such patients.

Although chronic inflammatory bowel diseases, which include ulcerative colitis and Crohn’s disease, are still relatively rare in Russia (their prevalence in the European part of Russia is 35–40 people per 100 thousand population), recently their number has been steadily increasing. In some regions of the country over the past 6–10 years, a six-fold increase in the incidence has been noted. The annual increase in Russian patients suffering from inflammatory bowel diseases is only 5–20 new cases per 100 thousand of the population, which corresponds to the average European indicators. However, behind these seemingly modest numbers are thousands of patients' lives. And a huge number of unresolved problems.

Procrastination of death is like

The highest prevalence of IBD today is recorded in the countries of Scandinavia, as well as North America, Canada, and Israel. However, the fact that in Russia the indicators of IBD is significantly less than the global indicators, alas, testifies not so much to the low incidence rate as to the insufficient detection of such patients. This is also due to the lack of a unified register of patients. In Russia, severe complicated forms of ulcerative colitis and Crohn's disease prevail with a high risk of disability and mortality - this is a consequence of a delayed diagnosis. Indeed, if the diagnosis of Crohn’s disease is established within 3 years from the onset of symptoms, the complication rate is 55%, then with a later diagnosis, complications will most likely develop in all 100% of cases. Unfortunately, the average time it takes to diagnose the onset of the first symptoms in Russia is 1.5 years for ulcerative colitis and 3.5 years for Crohn’s disease.

Losing disability, lose health

Unfortunately, there are difficulties not only with diagnostics. Since the cause of IBD is unknown, there is no radical treatment to date. And the anti-inflammatory therapy that is used is long, often lifelong and very expensive (one ampoule of a genetic engineering drug costs about 50 thousand rubles, and about one million rubles is required for an annual course of treatment). The cost of treating IBD in most countries is covered by insurance.

Today, patients with IBD are prescribed various medications, the effectiveness of which is clearly insufficient. For severe forms of the disease, mainly hormonal drugs are used, the administration of which is accompanied by a large number of side effects, and 40% of patients develop either hormone resistance or hormone dependence. The use of long courses of hormone therapy in a large percentage of cases ends with the need for surgical intervention. Therefore, most doctors believe that the use of hormonal drugs for more than three months is impractical.

Much less often than worldwide, Russian patients with IBD receive treatment with genetically engineered biological products. Unfortunately, even these expensive drugs are not a panacea, and in some cases it is not possible to avoid surgery. Nevertheless, biological preparations today are considered the most advanced and effective in the treatment of IBD.

In addition, Russian patients with IBD have a very big problem, which so far has no solution. It is because of her that treatment cannot be truly effective, despite any medications. The situation is such that almost 90% of patients with IBD receiving medications in our country have a disability and receive free treatment under the federal ONLS program (only for people with disabilities). Only a few have the opportunity to independently pay for very expensive treatments. Obtaining free medicines without disability is unfortunately impossible today. With the improvement achieved and the more stable remission, the disability is often removed from the patients, since the patient's well-being and appearance, normal test results and the absence of symptoms for the structures giving the disability are convincing and sufficient evidence that the patient recovered. Unfortunately, it is not. The whole point of the problem is that the huge funds that were spent to achieve remission are wasted, because as soon as people lose their disability, they stop taking medications, which for a short time leads to a new exacerbation, complications and surgery. It turns out a paradox - to be healthy, you need to remain disabled. This problem needs to be solved in the first place, because otherwise the very meaning of treatment is lost, the purpose of which is to avoid disability and keep young people working.

Need a change!

To change the situation in the treatment of IBD for the better, a whole range of different measures is needed. It is necessary to engage in advanced training of primary care specialists - district physicians and pediatricians, as well as doctors of various specialties, who should be familiar with the basic principles of diagnosis and treatment of IBD. In addition, today there is a need to amend existing regulatory legal acts, which do not yet indicate the procedure for organizing medical care for patients with IBD. It is required to approve the standards for the provision of medical care for ulcerative colitis and Crohn’s disease, finally, to begin to keep records of patients suffering from inflammatory bowel diseases. It is also very important today to develop the routing of patients to provide them with timely and high-quality medical care. It is necessary in each region to create specialized centers of the WZK with a multidisciplinary team. All over the world, patients are observed precisely in such institutions. Such centers can be created on the basis of university clinics, research institutes, federal and regional research centers, large regional or regional hospitals. Such an institution should include specialists, including gastroenterologists, coloproctologists, endoscopists, morphologists, rheumatologists, nutritionists, ophthalmologists, dermatologists, ultrasound and radiation diagnostics specialists who are familiar with the specifics of IBD. There must be a continuity between the primary care unit, the municipal hospital, and the IBD center, so that the patient receives medical care all the time and, if necessary, treatment can be corrected. It is unlikely that it will be possible to achieve a reduction in the incidence rate, since an increase in the incidence rate is a global trend, but to improve and speed up diagnosis, reduce the number of complications, hospitalizations, operations, and begin timely adequate treatment, these measures will certainly allow. Thousands (tens of thousands) of young people who are now “overboard” the attention of medical and social structures would return to work and social life.

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