For an Orphan the forum will discuss possibilities of care for patients with rare diseases

At the X all-Russian Congress of patients, which took place at the end of last year, representatives of patient organizations and the medical community, analysts and experts, in fact, a strategic action plan in the framework of the national project “Health”, which will help to achieve the goals of the national project. Orphan on the forum, many points of the plan will be considered in the context of medical care for patients with rare diseases.

Photo: Sergey Maligawa/TASS Expanded the list of orphan diseases

One of the key points – patient organizations believe it is essential to ensure their participation in the discussion of future decisions by the authorities in various issues of public health. In addition, they can be used to expand public control in healthcare. For this you need to include in the regulatory framework the concept of “Council of public organizations for protection of patients ‘rights” to determine their status and powers to specify the principles of cooperation with the authorities.

Another important issue is the suppression of violations of rights of patients for free medical care. Now it is incumbent on the medical insurance organization. Therefore, in patients in the community believe that it is necessary to organize the exchange of information and collaboration with insurers. With regard to control over the provision of paid services, members of Congress have proposed to use the method of superposition of data from insurance companies on the registers of the assistance provided in the MLA.

the forum Participants will continue to discuss the topic of continuity-established treatment regimens in patients on lifelong therapy. Now, many “narrow” patient organizations that help people with specific heavy zābollower level, across one increasingly translated from the original foreign drugs at more affordable Russian (and not only Russian) counterparts. The solution may be different. By the way of replacing expensive original medicines with generics (when it comes to public procurement) are the most States. But it is impossible not to take into account the interests of the patient. At the Congress, for example, sounded quite a tough proposal “to legislate the possibility of replacing the drugs solely if there are medical indications.” Perhaps the forum will be discussed and more flexible approaches.

the Federation Council approved the law on the purchase of drugs for the treatment of orphan diseases Photo: press-service of SF Valentina Matvienko has told about solution of the problem of rare drugs

in addition, patients in the community insist that we need to have an approach to providing patients with innovative the most modern and effective drugs. But first you need to introduce the concept of “innovative drug” in the legislation, to develop a procedure for accelerated registration of these medicines. And rules for their procurement needs to incorporate a differentiated approach to pricing, depending on the therapeutic effect of a new drug compared to the drugs of the previous generation. It is also necessary to provide for the possibility of an emergency procurement such drugs if necessary.

All of the above is related to the organization of medical care and drug therapy all groups of patients. With regard to orphan diseases, the Congress was presented a priority list of measures, implementation of which will improve care for these patients.

Photo: Pixabay the situation with the diagnosis of rare diseases in Russia is improving

One of the key proposals is to transfer authority for the provision of medicines for these patients from the regional to the Federal level, it can improve the financing of the acquisition of orphan drugs. It is also necessary to work with a List of rare diseases, in particular, to establish clear criteria for inclusion in the list of rare diseases. In addition, providing these patients with necessary medications, it was suggested to complement clinical nutrition.

Members of Orphan forum will seek approaches to the solution of all these problems.