New law to give Russians access to medication for rare diseases
The Russian Federation Council has announced an increase in its support for the regions to ensure that people with rare diseases receive the appropriate medication.
The Chairman of the Russian Federation Council, Valentina Matvienko, complained about the appalling shortages in the supply of life-saving medicines to people in the regions caused by a lack of financial resources. She was pleased to report that the new law will ensure that people with rare diseases will receive the medication they need. The law will spell out the necessary procedures and the relevant federal authorities will be given increased powers to enforce them. Matvienko said that, given its obligations to the sick and the high costs involved, the central government authorities would buy the medicine using national funds. She said that there needed to be a more systematic approach and that the regional authorities would be handing responsibility for the purchase of the drugs to the federal authorities.
Chairman of the Russian Government Dmitry Medvedev has previously spoken out about the need to transfer the cost of medication for people with rare diseases to the federal authorities. He noted that that the number of life-saving drugs is always on the rise. Over the past three years over 100 different drugs have been added to the list, 85% of which are produced in Russia.
Scientists are aware of 7,000 rare diseases and the Ministry of Health has 215 of these diseases on its list. They include almost all genetic diseases and certain infectious and autoimmune diseases. In Russia rare diseases are considered to be those that affect 10 people in 100,000. There are no official statistics about the number of people with rare diseases in Russia but NGOs estimate that there are between 1.5 million and 5 million people who suffer from them.