26.07.2018

The bill to expand the 7 VZN programme (The Seven High-Cost Medical Conditions) was passed by the State Duma on Thursday 27 July, on its third and final reading.

The Press Office of the Lower House of the Parliament announced that as of 1 January 2019 full funding will be provided for the following conditions: haemolytic-uremic syndrome, juvenile arthritis with systemic onset and mucopolysaccharidosis types I, II and VI.  When the programme was first introduced in 2008 it covered haemophilia, cystic fibrosis, pituitary disorders, Gaucher’s disease, malignant neoplasms of the lymphoid, haematopoietic disease and multiple sclerosis.

The Speaker of the House Vyacheslav Volodin said that these changes in federal law will enable people with rare diseases to access vitally important treatment.  The medicine will now be funded by federal authorities; previously regional authorities had been liable for the cost of the treatment.  It had been a heavy financial liability that many authorities were unable to meet, the effect being that many people were being denied life-saving treatment.

It will now be possible for the Ministry of Health to bulk-buy the drugs centrally and reduce costs by around 20-30%.  The federal authorities will also be able to scrutinise the accounts more closely and bring down expenditure on the medication.

The Federation Council introduced the bill in response to complaints from the public about shortages in the supply of drugs and special dietary products needed in the regions for these conditions.

Statistics show that there are 2,130 people in the country who suffer from rare diseases, including 1,583 children.  The total cost of their treatment is 10 billion roubles per year.

Source: https://www.asi.org.ru/news/2018/07/26/redkie-zabolevaniya-gosduma/