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What needs to be done so that people with genetic disorders can have healthy children?

“IVF is necessary for families with genetic disorders,” reads the headline from an interview with the Chairman of the All-Russia Association of Rare Diseases, head of the federally-funded research laboratory for inherited metabolic disorders (at the Medical Genetic Research Center), and genetic physician, Ekaterina Zakharova, in the newspaper, Izvestia, on30 November 2016.

Currently, only patients with certain types of infertility can count on receiving free in vitro fertilization (IVF) treatments in Russia. However, free IVF for carriers of genetic disorders could reduce the number of therapeutic abortions, reduce disabilities in children, and also decrease the number of patients with rare disorders.

Ekaterina Zakharova spoke about how All-Russia Association of Rare Diseases and the medical geneticists association turned to the Ministry of Health and the State Duma with a request to amend Article 55 (“The use of assisted reproductive technologies”) of FZ No. 323 “On the fundamentals of public health protection of citizens of the Russian Federation.”

When an IVF procedure is conducted in the for-profit sector, it ends up costing a family at least RUB 200,000-300,000 for just one attempt, which only has a success rate of approximately 30 percent. There might have to be several attempts and not very many families can afford to pay this much.

For the sake of comparison, according to Ekaterina Zakharova, the cost of treating a child with a rare genetic disorder can add up to RUB 30 mln each year for the rest of that child’s life.

Another step in solving this issue is preimplantation diagnostics, which could be paid for with public funds. This is an important part of preventing inherited disorders at this stage of development in the field of genetics.