“The system must treat, and not to lead to disability”

Chronic rheumatic diseases have always been considered incurable and that condemns a man to profound disabilities. Especially quickly this came people with ankylosing spondylitis (Bechterew’s disease).In the recent years, the technology of treatment is able to reverse this situation. In particular, for Russian patients for that in the country there are innovative drugs, telemedicine, caring doctors and active patient group.But there is no money.

Ankylosing spondylitis(as) is a chronic progressive disease, manifested by inflammation of the joints of the spine. To date, scientists can not give an exact cause of the disease, it is considered that it is based on immunological disorders. But well-known consequences: long-term inflammation leads to a violation of movements in the joints, the spine is practically immovable. Often joined by extra-articular manifestations are lesions of the skin, eyes, kidneys.

New approaches to the therapy of Bechterew’s disease was the subject of several events held in Moscow the IV Eurasian Congress of rheumatology. In the days of the Congress held a photo exhibition a Disease of the young, or life with pain nine stands to the people in simple and familiar poses (the man turned around, sat down to tie a lace, looked up to the sky, ran), which is practically inaccessible for patients with ankylosing spondylitis. Red all silhouettes highlighted certain parts of the spine are those where lives the pain.

Lost time

As shown by a nationwide study, disease onset is usually in between 15 and 35 years, permanent disability occurs on average 15 years from onset of disease, and the average age of disability was 46.3 years. Compounding the situation is the fact that the beginning of treatment often lags behind the appearance of the first symptoms for 10-12 years, when the disease has passed into a running stage.

According to head. laboratory seronegative spondyloarthritis GNU NIIR them. V. A. Nasonova Professor Sandor Erdesa, precious time is lost in three stages. First, the patient himself is not in a hurry to the doctor, thinking the pain temporary, and for the first time addresses for medical aid after an average of 15 months from the onset of the disease. Then another 3-4 years spent on communication with doctors, the first contact with physicians, surgeons, neurologists, and treatment of osteoarthritis. During this time, as can join psoriasis, Revit, inflammatory bowel disease. And only once to a rheumatologist, as the patient receives the correct diagnosis and starts appropriate treatment.

But even at this stage, is lost time if you need to change the tactics of treatment. Today, rheumatologists are familiar with this disease and quickly diagnosed, told, ages. But we must continue to monitor the patient’s condition, response of the body to therapy. And it is not established that there is no coherent system in the dispensary, which was in the Soviet Union. Even more difficult with the transfer of the patient on expensive therapy in the field of money for drugs, as a rule, no.

Unfortunately, today subsidized medicines available in the best case patients with disability.And that a man finally free to obtain the necessary medications it needs to get to this point. Moreover, if the patients entered into remission due to costly treatment, did not confirm a disability on re-examination, they lose all benefits. And as a result, their condition is getting worse again. This vicious circle of disability people have to be severed, said Ardis: the system must treat the person and not bring it to the disability.

Telemedicine to help

Another problem is a shortage of specialists. As shown by a recent study of the Centre for social economy, is devoted to rheumatic diseases, the provision of national health care professional medical rheumatology is 50%. To some extent, help offset this deficit telemedicine technology. As said ACTING Director of the Institute of rheumatology Professor Alexander Leela, the Institute has an algorithm telemedicine patient consultations. And at the end of the month on the official website will be launched reference centre for spondyloarthritis, where doctors from the regions will be able to get free advice on the interpretation of images and other diagnostic data, the choice of treatment for refractory, toroidh forms of the disease and other issues.

In addition, the Institute of rheumatology developed a mobile application for online monitoring of patients. According to head. laboratory of scientific-organizational problems of the Institute doctor of medical Sciences Tatiana Dubinina, medical control directly affects the commitment of the patient to treatment. In Saratov conducted a study which showed that during the active monitoring of patients people tried not to provoke aggravation, and 74% of them were in remission. However, as soon as the monitoring stopped, a cast treatment, and they have a relapse. Regular monitoring is necessary not only for the assessment of disease activity, but adequate for purpose and timely change of drugs, said the rheumatologist. That is especially important in the treatment of modern genetic engineering Biologicals.

Innovative therapy

Until recently, treatment options of patients as confined to non-steroidal anti-inflammatory drugs, and baseline anti-inflammatory drugs (which are being abandoned as inefficient). In the beginning of XXI century there was a genetically engineered biological drugs that literally put people on their feet.

The first class of such drugs are inhibitors of tumor necrosis factor (TNF-). The second class appeared in Russia two years ago, when it was an inhibitor of interleukin 17A (IL-17A ), which plays an important role in the onset and development of inflammatory diseases of the joints. According to head. the Department of therapy and rheumatology of the North-Western medical University named. I. I. Mechnikov, academician Vadim Mazurov, the effect of the drug is aimed not only at improving clinical symptoms, but also on the inhibition of structural progression of the disease. And, then we can talk about targeted therapy of AC.

According to the updated 2018 Clinical guidelines, both classes of innovative biological products is recommended as first-line therapy for all patients with as. Looks promising and domestic genetic engineering development: new molecules that we study, will significantly expand the Arsenal of rheumatologists, told Leela.

Impossible To Treat To Save

Until the funds, is able to heal as not found, the main goal of therapy to achieve remission. But it is unattainable without help from the state for the average Russian modern genetic engineering therapy is not lifting. The President of the Association with ankylosing spondylitis Alexei Sitalo began with a slide: to Treat? Not? To save calling to place the correct punctuation marks.

According to him, many regions recognised that their budget has no money for medicine for people without status are disabled, that is, for the regional benefit recipients, which include the rheumatological patients. Saving budgets, regional authorities are going to outright manipulation. So, from 2005, the lists of vital and essential drugs included cytotoxic agents, and this group of drugs is consistent with the list of resolutions of the government of the Russian Federation, under which drugs are procured by the regions. However, in 2009 in order to bring to the who standard cytotoxic agents were called immunodepressantami. And now in some regions refuse to provide beneficiaries with immunodepressantami on the grounds that they are not in a government document.

As for the disabled, for their lambasruchei responsible Federal budget, but the criteria for determining this status in 2015 has changed so much that to him is almost impossible. But sometimes this is not necessary, say in patient organizations, most importantly providing patients with treatment in accordance with Clinical guidelines. Our position is confirmed by medico-economic calculations, – told Sitalo. Diseases of musculoskeletal system occupy the third place in the disability and causing great financial damage to the families of patients and society. In this research, Higher school of Economics has shown that the economic impact of the early treatment is 3-4 times higher than the costs.

According to the Centre for social economy, the increase in budget for the treatment of rheumatic diseases 9% will allow to provide access of patients to genetic engineering drugs by 438%. Absolyutnyh values this means that the number of patients receiving genetically engineered biologics will increase from 21 thousand to 113 thousand people, tochildren Center Ruslan Dreval. (According to expert estimates, the number of Russians with AU is about 300 thousands. people with rheumatoid arthritis about a million. The official data is much lower).

In a Society of mutual assistance for ankylosing spondylitis help patients to obtain needed medications. We who do not complain, and we appeal to the regional Ministry of health with the request to provide the patient’s medications, specifying the legal justification, – said Sitalo. And we ask the regional rheumatology: do not deny patients a drug for a medical necessity if the region did not purchase the drug or no money. Send people to us so we started to engage with the authorities. If you do not convey to the authorities a problem not to show them all of unsecured treatment of patients, the situation will never change.

Irina Reznik