Mechanical ventilation is the last line of care for ALS patients
Leading Russian and foreign experts took part in the Sixth All-Russian Patient Conference on ALS (Amyotrophic Lateral Sclerosis) – a key expert platform where patients and specialists can get the most up-to-date information on the disease. The event was traditionally held at the initiative of the Live Now charitable foundation. The event was supported by the Presidential Grants Fund.
The conference was attended by 24 experts, including international ones: Executive Director of the world's oldest charity organization for helping people with ALS Motor Neurone Disease Association Sally Light (London, UK), a famous American neurologist, professor, head of the ALS clinic at Duke University, founder of ALSUntangled, PhD Richard Bedluck and others.
The focus of this year is questions about the situation of patients in the regions and the specifics of their medical and social support. Today, regional patients still face a number of problems at the stages of referral to a specialist and hospitalization. Sergei Mokhov, Research Fellow at the Center for Medical Anthropology at the IEA RAS, postdoctoral fellow at Liverpool University named after S. John Moores. According to a socio-anthropological study on the strategy and main problems of receiving timely assistance for people with ALS, it was found that due to the lack of a system for accompanying patients by nurses, families experience colossal overload: they take on both patient care and financial costs. and also fully conduct all communication with all state and medical authorities.
One of the key issues – clinical research – was highlighted by Lev Brylev, neurologist, head. 1st Department of Neurology, GBUZ “GKB im. V.M. Buyanova DZM “, Ph.D., medical director of the CF” Live Now “. According to him, today there is still no complex therapy that could bring patients into complete remission, but there are many successful studies underway that give hope for positive changes in the near future. If earlier it was about the development of one possible drug, now 5-6 drug formulas are predicted to appear. More recently, a study was completed on a drug that acts on one of the mechanisms that gave a good slowdown in the course of the disease.
The culminating activity of the Conference was a round table with medical experts from more than 10 regions of Russia, including the main freelance specialists in palliative care, neurologists, and surgeons. The main task of the round table was to build an effective dialogue between regional representatives dealing with ALS patients, to create a platform for the exchange of experience and discussion of urgent problems.
One of the topics of discussion was the need for the adoption of clinical guidelines for the management of patients with ALS. The participants noted that today there is still no unified form of patient supervision, which significantly complicates the coordination of the treatment strategy with the local Ministry of Health. In addition, medical experts drew attention to the urgent need to include palliative care at the stage of diagnosis.
Every year, the Live Now Foundation provides comprehensive medical, social and educational support to hundreds of families who are faced with a diagnosis of ALS. Every month, 35-40 patients are registered with the Fund, and about 50 applications for psychological assistance are processed by the Fund's employees, which became especially relevant in 2020. “Over the past year, we have managed to reach a large audience. At the end of last year, about 1,000 families were actively supervised by the Foundation, who have access to consultations with specialists and receive advice on palliative care. We managed to secure the provision of patients with special equipment from the state in more than 40 regions of Russia, ”comments Natalya Lugovaya, General Director of the Live Now Foundation.
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