Association of people with special needs “Motus Vita” held a round table's discussions


On Friday, June 13, 2014, driven by association of people with special needs "Motus Vita, in the conference hall of the Ministry of Health of the Republic of Latvia was held a round table discussion on issues of rare diseases in Latvia. We recall that rare diseases, in the context of the discussion, are diseases of the neuromuscular apparatus, and, as it turned out, the statistics of rare diseases in Latvia is about 1:2500 and 5:10000 in the European Union.

The discussion was attended by representatives of various sectors - the president of the Latvian Association of occupational therapists, deputy of the Saeima, the private sector (who support to the market the means necessary for patients with rare disease), anesthesiologists, certified neurologists (including those who specializing in the field of rare diseases), immunologists, representatives of the pharmaceutical company "Sanofi", the Member of the Board of the Association of Family Physicians, the officials of the National Health Service and the Ministry of Health of the Republic of Latvia, doctors of medicine science, doctors in the field of genetics, the representatives of the company «SUSTENTO», psychologists and the Member of the Board of the Latvian Association of Health Psychology. The roundtable was also attended by relatives and friends of those who, not having received from the state qualified care, suddenly passed away due to a rare diagnosis.

Also we were supported by our volunteers that encourage or encouraged previously the initiatives of association of people with special needs “Motus Vita” and who is no stranger to the fate of people facing a rare diagnosis.

As it turned out, the problem of awareness of patients with rare diseases in Latvia has a vast nature. Unfortunately, it must be noted that the information on both the patients themselves, and of the availability of various types of support for them (assistive technology, etc.) is in a state of decentralization so this problem needs a broader integrated approach.

Key issues:

1) we still do not know the real number of patients with rare diseases because of there is no database on this issue. Of course, the absence of the figures makes it impossible to continue to operate with a request for additional funds from the state budget and to propose the necessary amendments to the state regulations;

2) there is a lack of awareness of physicians (including neurologists) about the opportunities provided by the state and various non-governmental organizations;

3) the total lack of centralization of information, as well as financial and psychological support. Some of the resources, as it turned out, belongs to private entrepreneurs.

Because of the fragmentation of the information it is impossible to determine the real costs in the country for treating of one certain patient. This fact averts us to submit to the state a real request for additional funds to improve the lives of patients with rare diseases.

It became clear that some experts from the private sectors, which were represented at the round table, conduct business only within their industry and lobby for their interests. We were not able to contribute their cooperation with each other for the exchange of professional information as well as to expand the scope of knowledge of the possibilities offered to patients with rare diseases to inform the patients at the proper level. Therefore, at this stage it is necessary to solve the problems of patients with rare diseases at a higher level, taking into consideration the fact that in the near future Latvia will be in the status of the presidium of the European Union and, as goals of society correspond to general goals and attitudes of any developed democratic state and the European Union as a whole, we hope that by drawing attention to the above-mentioned problems, thereby we can improve the situation in the field of rare diseases in our country.

And there is good news:

1) physicians (as family physicians as well as specialists of specific areas) agreed to the association's of people with special needs “Motus Vita” proposal for conducting Latvian doctors' necessary training and enhancing their skills in the field of rare diseases. This will take place in cooperation with foreign experts;

2) The Ministry of Health has already implemented a Plan for rare diseases and this fact, we hope, will make significant changes in the field of rare diseases and will improve the patients' lives. Presumably, the above strategic state planning document will be operational in 2015;

3) a vital drug "Rilutek" currently is paid by the state only in amout of 50%. As is known, the substance named riluzole significally prolongs survival of patient with amyotrophic lateral sclerosis. Taking into consideration the financial condition of the patients with the above mentioned diagnosis, it means, the increased costs of aids and frequent loss of efficiency, not everyone can afford to pay the remaining 50% of the drug. The problem is that in Drugs register the “Rilutek” has a wrong code (he is not considered a vital drug as it can be compensated by the state in all amount). At this  moment there are taking place negotiations with the Ministry of Health of the Republic of Latvia and the National Health Service to as soon as possible eliminate this problem. We asked to neurologists to support this initiative because they more than anyone else aware of the need for timely treatment of the patient.

We hope that everything will turn out! We'll keep you up to date!

We thank everyone who took part in the round table and special thanks to the officials of the Ministry of Health of the Republic of Latvia for the opportunity to hold a round table in the premises of the Ministry and the perfect environment for the organization of this event.

Katerina Verbilo, Mg. iur., Project Manager for the "Motus Vita"