Общероссийская общественная организация инвалидов-больных рассеянным склерозом

29 April 2009

Victor Khristenko, the Minister of Industry and Trade of the Russian Federation, chaired a working meeting with Board Chairman and Director of Novartis Daniel Vasella.

In the course of the meeting, they discussed perspectives of the company’s growing presence in the Russian market by means of expanding the manufacturing and research infrastructure in Russia.

The minister presented the core issues of the Strategy of the Russian pharmaceutical industry development until 2020. He said that the Strategy is ‘an uncontroversial combination of corporative strategies of market players and views the state has with regard to developing the innovative pharmaceutical sector’. He made a point of that ‘we see our principal mission over a long-term period in assisting start-up projects on the part of the government as well, then, in filling the gap between fundamental research and introduction of engineering results to the manufacturing’. He also added that it was planned to bring the share of pharmaceuticals made in Russia to 50% in the internal market by 2020 as compared to 20% of today. Victor Khristenko believes that the current weakening of the ruble can help encourage this process.

According to the Russian minister, to develop innovative manufacturing they will see at stake not the Russian market alone but the world one too on the whole. ‘As a matter of fact, this means a substantive transformation of the regulatory system working today in Russia in terms of harmonizing it with international standards. This will let us open a bilateral movement of products,’ Victor Khristenko stressed.

He stated that the companies would define themselves their own model to participate in the Russian market. Meanwhile, according to him, ‘there are good examples of big foreign players, who have either created a factory in Russia or purchased one and been developing this working active.’ Also, the minister noted that Russia could boast the good scientific school including that in chemistry and biotechnology. ‘Thus, to evolve a contract factory or start-up project in an innovation segment along with developing the research segment can also be effective,’ he added.

At the end of the meeting, Victor Khrisenko made a point of that the investor, who has come to Russia on clear grounds, who is willing to meet contract liabilities and who is interested to stay there long-term, is considered to be a Russian manufacturer. ‘Provided investors are ready to discuss perspectives with us and to be committed to long-term investments, this means they trust in what we do, but we equally feel our responsibility’, the Russian minister stated.

The meeting parties pointed out that they shared a common view on the perspectives of the Russian market development. Novartis representatives showed their interest to develop their manufacture and expand research capabilities in the Russian Federation.

30 April 2009

On 27 April in the Federal Service on Surveillance in Healthcare and Social Development (Roszdravnadzor), Nikolai Yurgel, the Federal Service Head, chaired the meeting on providing people with rare diseases with essential pharmaceuticals, including the programme of the seven nosologies requiring heavy spending. Some 30 non-for-profit organizations and agencies took part in the meeting:

The All-Russian Haemophilia Society, the All-Russian Association of Disabled People with Diabetes, the Moscow Diabetes Association, the Rheumatology Association “Nadezhda” (“Hope”), the Non-for-profit Partnership “Equal Right for Life”, the Anti-Cancer Movement, the Association of organizations of people with rare diseases ”Genetics” (S.-Pete), the Epilepsy Society (S.-Pete), the Society of patients with oncohematologic diseases, the Hunter Syndrome Society, the Organization of people with nephrological diseases “Right for Life”, the Organization for assistance to children with rheumatologic disabilities “Vozrozhdenie” (Renaissance), the Organization of nephrological patients “NEPHRO-LIGA”, the Organization for assistance to people with oncologic and oncohematologic diseases “Sodeystvie” (Assistance), the Organization for assistance to people with mucoviscidosis, the [All-Russian] Multiple Sclerosis Society, the Organization “Assistance to people with childhood disability who suffer from Gaucher's disease and their families”, the Tula Organization of disabled people “Diabetes”, the Foundation for science, education and medicine development, etc.

They discussed issues on interaction within the state in terms of the Roszdravnadzor and civil society represented by patient organizations. Nearly all representatives of the non-for-profit agencies noted positive developments in pharmaceutical provision for relevant patients and praised the Roszdravnadzor’s operation on organization of interaction and problem solving in non-for-profit organizations on the whole and each particular patient. The meeting heard various views on how to provide services in health, care, rehabilitation and social support. The representatives of non-for-profits told about their challenges and put forward requests and propositions.

In conclusion, Nikolai Yurgel mentioned that the Roszdravnadzor deems it extremely important what non-for-profits and, especially, patient agencies think in question, and their opinion is surely respected when making management decisions. He openly hopes for the ongoing and productive collaboration, which exists today between non-for-profit organizations and the Roszdravnadzor, and that it will be developing and getting stronger in the future.

The Roszdravnadzor head believes that an effective control and provision system of health services must be developed with non-for-profit organizations actively involved on both federal and regional levels. The directors of Roszdravnadzor territorial departments received relevant instructions to encourage interaction activities.

Russian people with MS and all those affected by the disease are welcoming the World MS Day (WMSD) in Russia. This event mobilizes the efforts of Russian activists in their fight against MS even harder while uniting them with numerous colleagues throughout the world. We strongly believe today that we have all capabilities to work effectively. Now, it is important to learn more, teach others and just keep on working, which will help give the best mark for the activities done in the end. What we need to achieve that is really know we are not alone.

We have heard a lot and, perhaps, spoken ourselves about ‘the feeling of fellowship’, how helpful it is in our activities and what productive team spirit it creates. There are many testaments to the proverb ‘one man in the field is no warrior’. Most likely, there had been no such unity among people, who would act and think alike in order to improve the quality of life of people living with multiple sclerosis (MS) before the attempt of the Multiple Sclerosis International Federation (MSIF) to do the first ever World MS Day on 27 May 2009. Indeed, it was the biggest action as each participant could feel in the global team, while the scope of events carried out within the framework of WMSD surely highlighted MS as a pressing problem as well as concerned those, whose opinion is counted and listened to and who is able to influence PwMS’ life.

In Russia, WMSD was, perhaps like in many countries, a trial balloon. However, our experience so far of implementing activities to benefit and advocate PwMS let us escape having a modest role, while our overseas colleagues were carrying out functions of large dimensions. Take, for instance, “Roll for MS” cycling and motorcycling events in Europe and Northern America – it is really breathtaking to see the strong approach that is used there to raise awareness of MS! Two women with MS climbing Mount Everest can more than encourage an upmost naysayer.

Yet, Russian people did not talk about WMSD alone but they were also doing something towards it. Everyone was free to choose the form and dimensions of an event to conduct. As usually, the Samara branch of the All-Russian MS Society was working a lot to get involved, but it was a good surprise to learn that other our colleagues in regions (provinces), significantly, and in their own way, contributed to the GLOBAL MS MOVEMENT and did their bit to reach the moment when we shall END MS.

Thus, in expectation of the World MS Day our workfellows in the Tula regional branch of the Society, in despite of current difficulties, managed to organize a meeting, where physicians, public authorities and PwMS were sitting together at the table. WMSD was not the only topic of their talk, since such companions should always have something to discuss. The persons with MS there talked about plans for the future with the people, who are immediately responsible for making relevant decisions.

During the function, the participants received some books as gifts. For instance, some of the physicians got the book ‘Syndrome of Upper Motor Neuron’, while Aleksandr Popov’s book was among participants ‘like hot cakes’. That day was also the starting point for the traditional action in the Russian MS movement ‘white ribbon’, which volunteers would tie to trees and other objects to draw attention of most people and, certainly, authorities. This helps raise awareness of MS among governmental authorities and the public. At the meeting, the officers pledged they would cover WMSD in the media.

In Voronezh, where the ‘Solominka’ newsletter is made - the newsletter to help fight the disease - the first two pages of the printed publication were dedicated to the Word MS Day.

Newsletter readers were interested in WMSD events that were taking place in other countries. The All-Russian MS Society staff attempted to do more and published WMSD news generated by MSIF on the website of the Society. Those news became immediately open to all Russian-speaking readers online, which helped greatly to raise awareness of WMSD and events held within its frames.

In Russia, the World MS Day was marked all over the country. In the far-eastern city of Vladivostok, PwMS chose for that their regular venue for meetings, i.e. the MS centre. Our colleagues held a conference there, during which the participants could have their questions answered. Though, WMSD in Vladivostok was not turned into another working day. The society members gathered in a café and went on marking the Day but in a more homelike atmosphere.

The Ulyanovsk regional branch of the All-Russian MS Society was also welcoming and encouraging people affected by MS to join the global movement.  Apart from the party for members of the society, much work to raise awareness was done among public authorities. Thus, the society staff sent the press-release about the World MS Day to the media, non-for-profit organizations of disabled people, the Department for social protection of the Ulyanovsk region, District Departments for social protection in the city of Ulyanovsk, etc. Moreover, on 27 May there was the Round-Table held in the City Duma (Parliament) to conduct the ‘Discussion of President Medvedev’s speech at the 7 April Session of the Presidential Council for the Disabled’. Tatiana Bezhanova, chairman of the All-Russian MS Society’s branch, complimented those present (there were representatives of non-for-profit organizations, Ulyanovsk city and region executive and lawmaking authorities) with the World MS Day. At last, on that very day the Ulyanovsk MS society held a tea-party for society members, which was dedicated to WMSD. People liked the party and decided to have another one to mark the All-Russian MS Day.

In expectation of the World MS Day, an MS Week was held from 20 to 27 of May in the city of Samara.

The action was organized by the Samara regional public MS organization (the Samara branch of the All-Russian MS Society).

On the first day, an exhibition-competition of creative works made by disabled people was opened, and it was working all the week long.

Next day, a charity party for PwMS took place.

On the third day, the society members enjoyed a concert given by students of Children School 20 – dancing group ‘Triumph’.

On the fourth day, PwMS and their families and friends went out and offered white ribbons (symbolizing MS) to residents of Samara, as well as posters and information messages.

The fifth day was marked by a gala-party dedicated to the World MS Day.

This week was excellent to kill the stigma given to PwMS, who are often associated with the loss of memory and declining years. Surprisingly, general public found young people among PwMS, who are in need of assistance and support.

It might be a coincidence that the anthem in the Samara branch of the All-Russian MS Society was written by the World MS Day. Even so, there are no further coincidences. Shortly before WMSD, students of the Samara State University department of social work chose to contribute to the global event in their own way. So, they held an action on housecleaning in PwMS’ places. The students visited PwMS with severe disabilities and tidied their homes. Actions like this in Samara unfold within the frames of ‘The Week of the Good’, when some assist disabled persons in their homes, while other participants of the action are busy with urban greening. However, this action cannot be called as a one-time service, since University students have been engaged for years in assisting lonely disabled ones by housecleaning, being on their errands to do shopping and other requests. Toward the World MS Day, the Samara branch of the All-Russian MS Society conducted a meeting with students of the University department of social work, which resulted in the development of a programme and signing a collaboration contract with the Samara State University.

Another significant activity by the World MS Day was the holiday event on 26 May with the participation of the heads of Social Service Centres at the Samara Ministry of Health and Social Development that was followed by drink reception and a concert.

Also, at the exhibition-competition all invitees could see creative works, handworks and pieces of arts and crafts made by the disabled.

In conclusion, I’d like to stress again the significance of marking the World MS Day as a date, when international efforts of MS movement mobilize, and we can take pride in seeing how numerous and strong we are in our struggle against the common trouble. However, I had better conclude by the wish our colleagues from the Taganrog regional branch of the All-Russian MS Society expressed, who also rated WMSD high but wished so that people with multiple sclerosis should be attended not only on such major occasions but also throughout the year.

Vice President, All-Russian MS Society

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.