From the Russian Multiple Sclerosis Society (http://www.armss.ru/)
Multiple Sclerosis (MS) is a severe chronic disease of the brain and spinal cord, which affects relatively young people and oftentimes results in disabilities. Over recent years, MS has tended to rapidly grow in frequency with onset among younger patients. This was caused by not only better diagnostic facilities for MS but also improvement of the quality of epidemiological research, yet the actual growth of the disease is also a reason. Currently, there are over 150,000 patients in Russia, of whom no less than 75% are already disabled. While including the families of patients and disabled people, MS as a problem involves from 750,000 to 1 million Russian citizens. At present, there are about 3 million people with MS in the world. The MS frequency in Russia is from 30 to 100 per 100,000 of general population.
70% families break up after one of the spouses is diagnosed
29% patients have not left their homes for over a year
78% patients are females under 50
75% patients have disabilities
35% are young people under 28
6% are children aged 10-15
Medical and social support for PwMS is a challenging and complex task, which cannot be resolved otherwise but in close cooperation between civil institutions, as well as expert and public ones. Since the course of the disease is unpredictable with the end deemed practically inevitable, while diagnostic facilities were untimely and pathogenic therapies were highly expensive and disabilities growing, some time ago patients with MS would not often get an adequate medical and social treatment as they were regarded as having no prospects. With introducing a range of medicines in the 90s of the 20th century to modify the course of multiple sclerosis (or, disease modifying drugs – DMDs), then, new medical and rehabilitation techniques, patients got a hope for the pathological process development to slow down, to prolong physical activity and working ability and quality of life.
However, MS requires overall significant resources employed being financial, organizational, scientific-methodic, social. In the 90s of the last century, the problem remained little-known and was considered by professionals as a specific scientific-medical one. For a long time, authorities and professional and general communities underestimated its high social significance and the necessity to concentrate on considerable efforts to fight it.
Nurse assistance services have been set up in 55 regions that carry out target medical maintenance of patients receiving highly expensive medicinal therapy. Nurses render consulting medical and social assistance to people with MS.
The crowning achievement of the ARMSS is that it has managed to translate, in the general public mind, MS as a problem from the ‘scientific and medical’ category into the ‘social and economic’ one, as well as to improve the quality of rendering medical assistance to Russians suffering from MS. The most outstanding result of this understanding became the guaranteed provision of highly expensive medicines (DMDs) for patients with MS at the expense of federal and regional budgets, which had been unthinkable of in the early 2000s.
The improvement of quality of life of people with MS is a result of combined activities of structures of civil society and authorities.
(after: Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities. by Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD)