The Protection of
Citizen’s Health Bill introduces the concept of ‘rare diseases’

The above was announced by Elena Grigorenko, chief executive of the
Moscow branch of the Association of Organisations of Patients Suffering from
Rare Diseases, Genetika, at a press conference which took place at RIA Novosti.

The bill which is due to be considered by the Duma (Parliament) at
its second reading in November includes an article specifically dealing with
rare diseases. According to the text diseases are considered to be rare where
10 cases occur per 10,000 of the population. The co-founder of the Union of
Patients and Associations of Patients with Rare Diseases, Snezhana Mitina, said
the position of patients with rare diseases will be much improved by the
proposed legislation. Her view is that: ‘In Russia people suffering from rare
diseases often have to obtain treatment via the legal route. However, even when
the court rules in their favor, they may have to wait several months for
treatment. Meanwhile the essential preparations are rarely in stock in the
regions and then only in small quantities.

The head of the patients’ council group on clinical registers at the
ministry of health and social development, Svetlana Karimova, said that 86 rare
diseases were to be found in the country. ‘In Russia 27 of these are treated.
As for the rest, preparations are either not registered or simply do not
exist’. Ms Mitina said that no decision had been taken by the ministry on the
issue of finance for the whole list of rare diseases. Ms Karimova observed that
if the powers lay with the regions then the supply of remedies was liable to be
interrupted which would prejudice the patients’ quality of life. This means
that financing needed to come from the consolidated budget of the Russian
Federation.

Participants at the press conference commented that enactment of the
bill would involve amendments to the Circulation of Drugs Law. Ms Karimova
thought that legislation should be brought in to allow the speedy purchase of
necessary preparations for treating rare diseases from abroad. ‘After the
second reading we plan to ask the ministry to introduce an expedited scheme for
regulating the registration of rare preparations’, emphasized  Ms Karimova. Furthermore, participants in
the press conference announced that they planned to propose to the ministry
that 2012 be declared the Year of Rare Diseases.

http://www.asi.org.ru/ASI3/rws_asi.nsf/va_WebPages/0D923B95ABC2E56FC32578FE002C37D7Rus