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LAW OF THE AZERBAIJAN REPUBLIC

of May 3, 2005 No. 905-IIG

About the state guardianship of persons sick with heritable diseases of blood - hemophilia and talassemiya

(as amended on 22-06-2021)

This Law determines organization-legal bases of the state guardianship of persons sick with heritable diseases of blood - hemophilia and talassemiya in the Azerbaijan Republic, governs the relations arising in the sphere of treatment and prevention of these diseases.

Article 1. Basic concepts

1.0. The basic concepts used in this Law have the following values:

1.0.1. heritable diseases of blood - various diseases of system of blood passing by inheritance from father to son;

1.0.2. hemophilia - the heritable disease of blood which is characterized by shortage of factors VIII and (or) IX in system of fibrillation;

1.0.3. talassemiya - the heritable disease of blood which is characterized by violation of synthesis of hemoglobin and chronic anemia owing to genetic defect;

1.0.4. the carrier - the person which is bearing in itself genetic defect of disease and not having clinical signs of disease;

1.0.5. carrier - the person bearing in itself genetic defect of disease and able to transfer him to the subsequent generations;

1.0.6. prenatal diagnostics - diagnostics during pregnancy (the analysis by genetic methods of the corresponding fabrics taken from fruit).

Article 2. The legislation of the Azerbaijan Republic on the state guardianship of persons sick with heritable diseases - hemophilia and talassemiya

The legislation of the Azerbaijan Republic on the state guardianship of persons sick with heritable diseases of blood - hemophilia and talassemiya (further - persons with heritable diseases), consists of the Constitution of the Azerbaijan Republic, the Law of the Azerbaijan Republic "About public health care", this Law, other regulatory legal acts and international treaties which participant is the Azerbaijan Republic.

Article 3. Tasks of the state in the sphere of the state guardianship of persons with heritable diseases

3.0. Tasks of the state in the sphere of the state guardianship of persons with heritable diseases are:

3.0.1. acceptance and implementation of the State Program on heritable diseases of blood;

3.0.2. approval of amounts and the quality standards (meeting international standards) the medical care provided in the out-patient and stationary conditions to persons with heritable diseases of blood;

3.0.3. creation and maintaining the register of persons with heritable diseases of blood;

3.0.4. creation of the specialized medical institutions performing medical examination, inspection and treatment of persons with heritable diseases of blood, structures of hematologic service and strengthening of their material and technical resources;

3.0.5. preparation and advanced training of medical specialists in treatment of heritable diseases of blood;

3.0.6. education of the population for the purpose of prevention of heritable diseases of blood;

3.0.7. annual implementation of massive screening programs among the population for the purpose of identification of carriers of gene of talassemiya and carriers of disease of hemophilia;

3.0.8. ensuring application of method of prenatal diagnostics for the purpose of prevention of disease of talassemiya;

3.0.9. carrying out scientific research on heritable diseases of blood, coordination of activities of physical persons and legal entities in this sphere and implementation of methodical actions;

3.0.10. placement in medico-social organizations of the deprived social communications of persons with severe forms of disease for their complete content on the state providing;

3.0.11. creation of conditions for international cooperation in the sphere of prevention and treatment of heritable diseases of blood.

Article 4. The register of persons with heritable diseases of blood

The register of persons with heritable diseases of blood is created by relevant organ of the executive authority for the purpose of ensuring conducting data recording of persons, receipt of data about health of patients, cases of deterioration, disability and death, and also efficiency of treatment-and-prophylactic measures. In the register the information about the identity of the patient, his disease and the instructions concerning medical care is registered, for each patient the special map is filled in and this card is placed in databank.

Article 5. Medical care to persons with heritable diseases of blood

5.1. The amount and procedure for delivery of health care (including inspections) to persons with heritable diseases of blood, the list and amounts of blood, components of blood and medicines, means for preparation of components of blood are determined by relevant organ of the executive authority.

5.2. Medical care is provided to persons with heritable diseases of blood based on their personal appeal or the direction of treatment and prevention facility, and to persons which did not reach 16 years based on the address of their parents or other legal representatives.

5.3. Based on the direction of medical institution according to the procedure, established by relevant organ of the executive authority, persons with heritable diseases of blood are provided with sanatorium treatment.

Article 6. Financing of actions for inspection and treatment of persons with heritable diseases of blood

6.1. Inspection and treatment of persons with heritable diseases of blood in the public medical institutions are financed by means of the government budget.

6.2. Actions for inspection and treatment of persons with heritable diseases of blood can be performed at the expense of means of municipalities, assignments on compulsory medical insurance, donations of physical persons and legal entities, and also other means which are not forbidden by the legislation.

Article 7. The rights of persons with heritable diseases of blood

7.0. Persons with heritable diseases of blood have the following rights:

7.0.1. receive on medical indications medical care in out-patient, stationary or sanatorium conditions;

7.0.2. receive comprehensive and regular data on the state of health, essence of disease, the applied treatment methods, results of the carried-out treatment;

7.0.3. receive in the public and local medical institutions free medical care concerning planning of family and to medico-psychological aspects of the family and marriage relations, and also for the purpose of non-admission of possible heritable diseases in posterity, undergo inspection and be under dispensary control;

7.0.4. work in any workplaces, except for professions (positions) and workplaces with the heavy, harmful and dangerous working conditions making negative impact on health of the worker and established by the labor law of the Azerbaijan Republic;

7.0.5. in the procedures and cases established by the legislation to get vocational education.

Article 8. Obligations of persons with heritable diseases of blood

8.0. Obligations of persons with heritable diseases of blood are:

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