Better medication for people with rare diseases?

Russia’s Ministry of Health is ready to expand the state’s programme for the provision of medicines to people suffering from rare diseases


02.12.2013, Moscow


The Russian Federation’s Ministry of Health is leaving open the possibility of including the “Study of seven diseases” into a programme which aims to provide medicines to people with such rare diseases as mucopolysaccharidosis (Types I, II and VI).

The problem of providing medicines to children suffering from rare (orphan) diseases in various Russian regions has been the focus of round-table discussions, explained Elena Maksimkina, Director of the Department for the Provision of Medicine and Regulation of the Distribution of Pharmaceutical Products at the Ministry of Health.

Patients’ organisations have repeatedly called for these diseases to be included in the federal programme, as well as an inventory of the centralised purchase of medicines from the federal budget. Consequently, at the end of September, the National Association of Organisations for Sufferers of Rare Diseases “Genetika” suggested that paroxysmal nocturnal hemoglobinuria, atypical haemolytic uremic syndrome and mucopolysaccharidosis (Types I-III) be included in the programme. According to experts, this would allow budget expenditure to be optimised, help introduce centralised state control of pricing and a system for purchasing expensive medicines, and remove discrimination based on disease.

According to the “Genetika” association, not one regional budget can currently provide sufficient care for the needs of patients with the diseases listed above. This is confirmed by the Ministry of Health.

“We’re really talking about large sums from the regional budget. We’re faced with a situation where regions are trying to buy flats for parents in Moscow and bring them there because this is cheaper than providing medicines for these patients. In addition, we are already starting to receive letters from Moscow, saying that the number of patients with orphan (rare) diseases has increased several hundred-fold since the beginning of the year” said Elena Maksimkina to Russian Information Agency Novosti.

Preliminary results of monitoring of children suffering from orphan diseases in Russian regions were discussed at the round-table.

It is recognised that only 30 out of 78 Russian regions have area programmes for rare (orphan) diseases. In addition, more than 50 regions (Moscow, Orenburg Samara, Sakhalin, Tula, Kirov districts and others, plus the Udmurt, Chechen, Chuvash republics and others) are finding it extremely hard to provide medicines for children suffering from orphan diseases, according to the press office of the Russian Federation’s President for Children’s Rights.

More than 50 out of 170 children with mucopolysaccharidosis receive intermittent treatment or none at all. It’s been said that 3.5 – 4 billion roubles is needed annually to provide for all children with mucopolysaccharidosis (MPS).

Report by Yulia Vyatina

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