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    A predictable compromise? // Decree No. 640 against

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    On October 4, the Federal Medical and Biological Agency of Russia (FMBA) held another round of discussions around a draft agreement on the transfer of the Vasya Perevoshchikov National Bone Marrow Donor Registry (National RDKM) of its base to the Federal Registry. Kommersant reported on this discussion (see “Personal File of a Citizen”, September 30). On October 3, the National RDCM sent an amended version of the agreement to the FMBA, suggesting, among other things, the Federal Register to make quarterly information reviews on the work of its suppliers and users. Back in September, the FMBA was against it: the service was not provided for in the terms of reference. And Rusfond and the National RDKM appeared armed with arguments on October 4.

    But there was no dispute over the information reviews. FMBA representative Olga Eichler said that the Federal Register is able to provide statistics and it is necessary to clarify the details.

    However, there was a dispute. It appeared, it would seem, quite out of the blue – around the preamble of the agreement. The FMBA invites the National RDKM to sign an agreement with its Center for Strategic Planning (CPR) and calls to be guided by Government Decree No. 640 on the Rules for Maintaining the Federal Register. But Decree No. 640 does not regulate the relationship between the FMBA and the non-profit NPO registry. Therefore, Anna Andryushkina, Director General of the National RDKM, proposes to conclude an agreement “in order to develop bone marrow donation”:

    — Government-approved Rules allow the Federal Register to partner with organizations that attract volunteers. FMBA considers this sufficient reason to enter into a data transfer agreement with us. Yes, we are recruiting. But recruiting donors, according to the FMBA, does not involve laboratory studies of genotypes. And even more so, recruiting does not apply to working with donors whose genotypes coincided with the patient’s. The National RDCM has these competencies, it generally owns the whole complex of processes that make up bone marrow donation. Today it is the largest register in the country, we have over 71,000 volunteers. This year, we have already provided 60 unrelated transplantations in the country and abroad with stem cells.

    In fact, an obstacle that seems to be a pure formality in a specific agreement that the parties are already (!) Ready to sign is an essential confrontation health officials and the nonprofit sector.

    The problem is that Ordinance #640 does not recognize the National RDCM as a Federal Register provider. (But the agreement with the CPR recognizes! And the National RDKM is not against it.) Only institutions with licenses for clinical laboratory diagnostics, bone marrow sampling or its transplantation are classified as suppliers. And only suppliers have the right to count on state funding for the growth of their bases. Rusfond invested 820 million rubles. in the creation of the National RDKM as a holding of public and private organizations. For genotyping, we have built and maintain a laboratory at the Kazan (Volga Region) Federal University. The Invitro company, other private laboratories and the Russian Post help us recruit volunteers. And the medical directorate of the National RDKM contracts state clinics for stem cell collection and provides logistics for the transfer of transplants in the country and abroad. It also systematically works with donor assets, and therefore the quality of the base here is several times higher than in state registers.

    Yes, this is an unusual model for public healthcare. But it is built in accordance with Russian legislation and demonstrates the highest performance. And the FMBA refuses to recognize this model as equal to state local registers, referring to Decree No. 640. The agency is lying. Back in the spring, when draft resolution No. 640 was put up for public discussion, Rusfond and the National RDKM sent their amendments to the FMBA and the government. In particular, we proposed to add to the Rules the license “Organization of health care and public health”, which is held by the National RDKM. Deputy Prime Minister Tatyana Golikova then instructed the agency to study our proposals and “if necessary, prepare a regulatory legal act.” But the FMBA did not find the need, and Rusfond reported that it “does not have the competence.”

    In other words, now, whenever it comes to the relationship between the Federal Register and the National conflict with the law? Yes. In particular, with the Civil Code of the Russian Federation, with its article 1334 on the rights of the database manufacturer, including the exclusive right to it.

    But at least this time it will be possible to reach a compromise?

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