ОБЩЕРОССИЙСКАЯ ОБЩЕСТВЕННАЯ ОРГАНИЗАЦИЯ ИНВАЛИДОВ-БОЛЬНЫХ РАССЕЯННЫМ СКЛЕРОЗОМ

Yelena Telnova: No pharmaceuticals supply shortfalls in any Russian region today

This is what Elena Telnova, Deputy Head of the Federal Service on Surveillance in Healthcare and Social Development (ROSZDRAVNADZOR) stated about to the press. ‘There are no pharmaceuticals supply shortfalls in any Russian region. The turnover of pharmaceuticals has not decreased’, she reported. Yelena Telnova believes that the current financing for pharmaceutical provision is quite sufficient. Mrs Telnova reminded that additional 12 billion rubles (€260 million) have been allocated out of the government budget for pharmaceutical provision this year. All this money has gone to regions to be spent on pharmaceuticals for people qualifying for entitlements. Besides, the budget earmarked for 2009 already had 28 billion rubles (€608 million) assigned for this purpose. Also, 37 billion rubles (€804 million) will be used this year to purchase pharmaceuticals for people with the seven most severe diseases that require heavy spending.

In the near future, the ROSZDRAVNADZOR will conduct an analysis of the pharmaceutical market, i.e. all its segments: retail, wholesale, production. Experts are keen to clear up further developments of the market situation. For the moment, medicines amounting to 14 billion rubles (€304 million) as the Additional Pharmaceutical Support (APS) provision and assigned for the seven nosologies that require heavy spending, have been delivered to regions of Russia since the beginning of the year. This is 44% more as compared to the last year’s corresponding period. The share of prescriptions of the deferred provision list, the prescribed medicines have not been bought out accordingly, makes 1%. At the beginning of 2008, the figure was as much as 7%.

AMI-TASS

MP's discussed the Conception of the Russian healthcare development until 2020

Jan 30, 2009

Among other positive points of the Conception, the most important is that it contains preconditions to improve the financial provision of the healthcare system, Health Protection Committee chairwoman Olga Borzova stated at the Parliamentary Hearings on ‘the Conception of the Russian healthcare development until 2020. Legislative aspects’. According to her words, the document highlights the system of measures to form healthy lifestyle. Another positive step is the transition of uniform social tax to insurance payments into the Compulsory Medical Insurance with a simultaneous increase in the tariff up to 5.1%. It is necessary to make a legislative move to fix government guarantees for medical assistance, the procedures and locality to provide paid medical services, distinguishing between them and free medical assistance, the deputy said.

Besides, Olga Borzova told that it will be required by law to resolve the issues, which have to do with establishing the national pharmaceutical policy: inclusion of pharmaceutical support for people in the programme of government guarantees to provide medical assistance for free, and in the medical and economic standards in the form of their component; inclusion of pharmaceutical support in medical insurance. These will require appropriate reflections in federal laws, and the relevant steering group is already working on it.

‘No doubt, the current procedure of government purchases of pharmaceuticals, which is reflected in the active legislation, is wrong, since pharmaceuticals purchases are carried out at auctions. Urgent modifications are necessary in the Federal Law #94-FZ, which will serve as a measure to fight crisis and corruption. It’s time to establish order. We insist on that the price cannot be the principal criterion when purchasing [pharmaceuticals] and it is essential to proceed from criteria of the quality of pharmaceuticals,’ the Committee chairwoman stressed.

Press Service, Committee State Duma on health protection

Children and MS

solominka #3, March 2009. alpha and omega talk

On February 3, neurologist of the Research Children Health Centre at the Russian Academy of Medical Sciences (RAMS), Olga Bykova, PhD, visited the city of Voronezh. Dr Bykova has been engaged in treating children with multiple sclerosis for over 12 years. In our talk, Dr Bykova told us about difficulties and new opportunities in diagnosing and treating children for MS in Russia.

— According to provisional statistical estimations, 5% out of 150 thousand Russians with MS are believed to be children, which means 7,500 patients aged from 16 to 17 should be under neurologist supervision. In reality, specialist doctors supervise just 300 people. I wonder where the others are… 

The lack of information about medical qualified help rendered to persons with this severe illness has resulted in that mere 1% of children are supervised by experienced physicians. The Research Children Health Centre at RAMS provides consulting assistance services and medical care to every Russian child-patient. However, we often witness things happening as follows. The parents of a child-patient resort to advertised services, in their search for specialists they go online and find witch-doctors, who promise to cure MS, resulting eventually in the parents’ enormous money thrown ‘out the window’. Patients would be happy to go anywhere – be it even a foreign country. In our experience, there were patients residing in our vicinity, who had learned about our services from professionals being abroad, yet the description of the activities of the Research Children Health Centre at RAMS can be found on the Internet.

Sadly, we lose precious time to timely start therapeutic intervention. Problem two for Russian patients is incorrect diagnosis. The third one is a common error of physicians, that is, diagnosis as a verdict for an incurable patient. I admit there isn’t a cure for the disease found yet, but there are medicines today to encourage long remissions in patients, as well as to reduce or alleviate exacerbations, which help patients to significantly ‘postpone’ disabling symptoms.

What do the parents need to do if their kid has MS?

— Children with MS tend to be teenagers, so intimate and confidential contact is essential in dealing with them. The child himself will let his problems out, but serious aspects must be confided in a professional only. The important thing for the parents is not to ignore complaints and manifestations of the disease, but reminding of the disease constantly may irritate, and, furthermore, orienting the child that he will have a severe disease in the future is unacceptable either.

Sometimes a mother with MS cannot stop seeing MS symptoms in her children. In your experience, is the heritable MS a common thing?

We have seen cases of ‘supposed heritable disease’ in patients. Actually in families, where one of the parents has MS, prevalence of MS as a hereditary disease is quite moderate. We can see a child with MS, whose parent also has it, a little more often than in populations on the whole. Even though MS comes again, one shouldn’t make the child’s life a burden in advance. If you notice MS symptoms and it makes you nervous, you may let your child undergo MRI-scanning once every three years. But you really shouldn’t search your child for MS signs and diagnose them on your own.

Are children prescribed high-priced pharmaceuticals being on the 7 nosologies list (the state-run programme to provide people with severe diseases with expensive drugs, including DMDs for PwMS - *translator’s note)?

— Yes, we do prescribe the medicines tested in teenage-children and approved, nevertheless the therapy (i.e. injections and side-effects) must not be more severe than the disease itself. Another significant problem we have is that we do not have tenders to include pharmaceutical provision for children on the 7 nosologies programme. This should be an initiative coming from regional agencies; no data in hand means no assistance for children.

Provided there are quotas in regions, then, we hospitalize a child, with the parents’ consent, in Moscow. The child undergoes additional examination there, has his diagnosis elaborated, and his/her therapy commences under our and the parents’ supervision. We dispense medicines for a short period of time. Should the relevant agency in their region not be able to provide them with the medicines, we provide the medicines for a 3-month period.

The Research Children Health Centre at RAMS has all necessary diagnostic equipment, and there are professionals to treat Russian children with multiple sclerosis, who need help.

M.Avstriyevskaya, Ye.Davydova

VOLGOGRAD. SEPTEMBER, 2009

 

Multiple and very treacherous

This is what they discussed in the city of Volgograd that became a centre of struggle with multiple sclerosis (MS) over several days. In late September, with the support of the Council of MS Centres at the All-Russian Neurologist Society, there was held a school training on MS for neurologists of practical healthcare; it was also a venue to convene for plenipotentiary public experts of the All-Russian Public Organisation of Disabled People with multiple sclerosis (All-Russian MS Society).

      

Well, what is exactly multiple sclerosis? This is the severest disease known among those of the central nervous system. This is the malady of the young and good-looking.

For information: there are 130,000 people with MS in Russia.

78% - women under 50.

35%, i.e. 27,000 people – under 35.

6% - children aged 10-15.

80% - people with higher education (Bachelor’s and Master’s). Over the last years, the number of young people with MS has grown substantially who come from student environment after the spring session.

70% of families break up following someone develops MS there.

75% of PwMS get severe disabilities unless treated and cared for adequately.

29% of PwMS have not gone out for over a year.

It is particularly worrying that the situation increasingly deteriorates; the estimations of experts of the Neurology Research Institute at the Russian Academy of Medical Sciences (RAMS) suggest that on average MS incidence grows by 7% annually being fed mostly by students.

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school of plenipotentiary public expert (training level 1)

03 October 2009

Volgograd, 24-26 September 2009, School of Plenipotentiary Public Expert

On 23-27 September 2009, the next School of Plenipotentiary Public Expert (PPE) was held. The representatives of the Volga and South Federal Districts (Ulyanovsk, Nizhniy Novgorod, Samara, Ufa, Kumertau, Orenburg, Yoshkar-Ola, Kazan, Cheboksary, Saratov, Kirov, Perm, Izhevsk, Taganrog, Stavropol, Krasnodar, Vladikavkaz, Rostov-on-Don, Elista, Volgagrad), as well as the representatives from Yekaterinburg and Moscow met in the city of Volgograd to discuss the insights of the PPE mission and ways to improve the efficacy of their work in regions, to exchange the best practices.

The steering committee pointed out the discussion of objectives of ‘the PPE Functional in Regions, the work with agencies of legislative and executive authorities, Media’ as one of the main goals.

The ‘Yuzhnaya’ Hotel provided the meeting venue. Experts from different regions took the chance to discuss topical issues, share views and put questions to their seniors being the Federal PPEs and Director of the All-Russian MS Society Dr Alla Beltyukova.

Dr Beltyukova believes such meetings must happen annually with two representatives from each region. She made a point of that the format of the meeting serves most effectively the purpose of developing the voluntary work of PwMS in a region.

Vice President for the Ural Federal District Andrei Frolov suggested the next training should be held in Yekaterinburg with representatives of several Federal Districts invited to the meeting.

There are 200,000 people with MS in the Russian Federation. Persons under 70 make 90%. This is why the problem of MS is increasingly deemed obvious by everybody today.

Information Dept, the All-Russian MS Society

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