The System Should Heal, Not Bring To Disability

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The System Should Heal, Not Bring To Disability
The System Should Heal, Not Bring To Disability

Video: The System Should Heal, Not Bring To Disability

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Video: Questioning Cure: Disability, Identity, and Healing 2023, January

The system should heal, not bring to disability

Chronic rheumatic diseases have always been considered incurable and dooms a person to profound disability. But treatment technologies that have appeared in recent years are able to reverse this situation. Including for Russian patients - for this there are innovative drugs, telemedicine, caring doctors and an active patient organization. Only money is missing.

"The system should heal, not bring to disability"
"The system should heal, not bring to disability"

Photo: Google Images /

Chronic rheumatic diseases have always been considered incurable and dooms a person to profound disability. Especially quickly people with ankylosing spondylitis (ankylosing spondylitis) came to this. Treatment technologies that have appeared in recent years are able to reverse this situation. Including for Russian patients - for this, the country has innovative drugs, telemedicine, caring doctors and an active patient organization. Only money is missing.

Ankylosing spondylitis (AS) is a chronic progressive disease manifested by inflammation of the joints of the spine. To date, scientists cannot name the exact cause of the disease; it is generally believed that it is based on immunological disorders. But the consequences are well known: prolonged inflammation leads to impaired movement in the joints, as a result, the spine is practically motionless. Often, extra-articular manifestations also join - lesions of the skin, eyes, intestines.

Several events of the IV Eurasian Congress of Rheumatologists held in Moscow were devoted to new approaches to the therapy of ankylosing spondylitis. During the days of the Congress, a photo exhibition "Disease of the Young, or Life with Pain" was held - nine stands depicting people in simple and familiar poses (a person turned around, sat down to tie a lace, raised his head to the sky, ran), which are practically inaccessible to patients with ankylosing spondylitis … In all silhouettes, certain parts of the spine were highlighted in red - those where pain always lives.

Lost time

As shown by a multicenter Russian study, the onset of the disease usually occurs between 25 and 35 years old, permanent disability occurs on average 15 years after the onset of the disease, and the average age at disability is 46.3 years. The situation is aggravated by the fact that the start of treatment often lags behind the onset of the first symptoms by 7-8 years, when the disease has already passed into an advanced stage.

According to the head. laboratory of spondyloarthritis FSBSI NIIR them. V.A. Nasonova of Professor Sandor Erdes, precious time is lost in three stages. At first, the patient himself does not rush to the doctor, considering back pain to be a temporary phenomenon, and for the first time seeks medical help on average 15 months after the onset of the disease. Then another 3-4 years are spent on communication with doctors of "first contact" - therapists, surgeons, neurologists - and the treatment of "osteochondrosis". And only after getting to a rheumatologist, the patient with AS receives the correct diagnosis, and adequate treatment begins.

But even at this stage, time is wasted if it becomes necessary to change the treatment tactics. “Today rheumatologists are very familiar with this disease and diagnose quickly,” Erdes said. “But then we must monitor the patient's condition, evaluate the effectiveness of therapy in dynamics. And this has not been established - there is no that harmonious system of dispensary registration, which was in the Soviet Union. Due to the peculiarities of drug provision and financing in the regions, it is not always possible to transfer the patient to genetically engineered biological therapy in a timely manner."

Unfortunately, today, preferential drug provision is available at best to patients with a disability group. And in order for a person to finally begin to receive the medicines he needs for free, he must reach this state. Moreover, if patients who have entered remission due to expensive treatment do not prove their disability at reevaluation, they lose all benefits. As a result, their condition deteriorates again. This vicious circle of disability should be broken, Erdes believes: "the system should heal a person, not bring him to disability."

Telemedicine to help

Another problem is the lack of specialists. According to a recent study by the Center for Social Economy on rheumatic diseases, the number of rheumatologists in the national healthcare system is 50%. To some extent, telemedicine technologies are helping to compensate for this deficit. As the director of FGBNU NIIR them. V.A. Professor Alexander Lila Nasonova, the institute has an algorithm for telemedicine consultations for patients. And in the near future, a reference center for spondyloarthritis will be launched on the official website, where doctors from the regions will be able to receive free consultations on the interpretation of images and other diagnostic data, the choice of treatment tactics for resistant, torpid forms of the course of the disease and other issues.

In addition, the Institute of Rheumatology has developed a mobile application for online patient monitoring. According to the head. laboratory of scientific and organizational problems of the Institute, Ph.D. Tatyana Dubinina, medical supervision directly affects the patient's adherence to treatment. As an example, she presented data from a study conducted in the city of Saratov, which showed that during active monitoring, 74% of patients achieved low disease activity. However, as soon as monitoring was stopped, many stopped treatment, and they had relapses of the disease. Regular monitoring is needed not only to assess the activity of the disease, but also for adequate prescription and timely change of drugs, the rheumatologist emphasized. What is especially important in the treatment with modern genetically engineered biological products.

Innovative therapy

Until recently, the treatment options for patients with AS were limited to non-steroidal anti-inflammatory drugs. At the beginning of the XXI century, genetically engineered biological drugs appeared that literally put people on their feet.

Tumor necrosis factor α (TNF-α) inhibitors are the first class of such drugs. The second class appeared in Russia two years ago, when an inhibitor of interleukin 17A (IL-17A) was registered, which plays an important role in the occurrence and development of inflammatory diseases of the joints. According to the head. Department of Therapy and Rheumatology, Northwestern Medical University. I.I. Mechnikov, academician of the Russian Academy of Sciences Vadim Mazurov, the effect of the drug is aimed not only at improving clinical symptoms, but also at inhibiting the structural progression of the disease. And, therefore, we can already talk about targeted therapy for AS.

According to the Clinical Guidelines updated in 2018, both classes of innovative biological products are recommended as first-line therapy for all patients with AS. Domestic genetic engineering developments also look promising: “the new molecules that we are studying will significantly expand the arsenal of rheumatologists,” said Alexander Lila.

Treat Cannot Save

Until a remedy is found that can completely cure AS, the main goal of therapy is to achieve remission. But even it is unattainable without the help of the state - for the average Russian, modern genetic engineering therapy is not up to the mark. The speech of Alexei Sitalo, President of the Society for Mutual Aid in Bekhterev's Disease, began with a slide: “Treat? Can't you? Save ", calling for the correct punctuation.

According to him, many regions admit that their budgets do not have funds for medicines for people without the status of disabled people, that is, for “regional benefit recipients,” which include many rheumatological patients. Saving budgets, regional authorities refuse to provide patients with medicines for various reasons. So, since 2005, cytostatics have been included in the VED lists, and this group of drugs corresponded to the list from the decree of the government of the Russian Federation, on the basis of which drugs are purchased at the expense of the regions. However, in 2009, in order to bring them up to WHO standards, cytostatics were called immunosuppressants. And now in some regions they refuse to provide the beneficiaries with immunosuppressants on the grounds that they are not in the government document.

As for the disabled, the federal budget is responsible for their medical supply, but the criteria for establishing this status have changed so much since 2015 that it is almost impossible to get it. But sometimes this is not necessary, they say in patient organizations, the main thing is to provide patients with treatment in accordance with Clinical Recommendations. “Our position is confirmed by medical and economic calculations,” said Alexey Sitalo. - Diseases of the musculoskeletal system rank third in disability and cause great financial damage to the families of patients and society. At the same time, studies by the Higher School of Economics have shown that the economic effect of timely started treatment is 3-4 times higher than the costs."

According to the Center for Social Economy, an increase in the budget for the treatment of rheumatic diseases by 9% will ensure access of patients to genetically engineered drugs by 438%. In absolute terms, this means that the number of patients receiving genetically engineered biological products will increase from 21 thousand to 113 thousand people, said Ruslan Dreval, director of the Center. (According to expert estimates, the number of Russians with AS is about 300 thousand people, with rheumatoid arthritis - about a million. Official figures are much lower).

The Society for Mutual Aid for Bechterew's Disease helps patients to obtain the necessary medicines. “We are not complaining about anyone, but we appeal to the regional ministries of health with a request to provide the patient with medicines, indicating the legal justification,” Sitalo said. “And we ask regional rheumatologists: do not deny patients a medicine for non-medical indications - if the region has not purchased the drug or there is no money for it. Send people to us so that we can begin to interact with the authorities. If you do not bring the problem to the attention of the authorities, do not show them the queue of patients who are not provided with treatment, the situation will never change."

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