Drug demand satisfaction of patients with idiopathic pulmonary arterial hypertension
https://doi.org/10.34215/1609-1175-2019-4-18-22
Abstract
Objective. The study objective is to analyze data of territorial subjects of the Russian Federation on idiopathic pulmonary arterial hypertension (IPAH) – nosology included in the list of life threatening and chronic advanced rare (orphan) diseases leading to the reduction in life expectancy of citizens or to their disability.
Methods: Based on regulatory legal acts and federal patients registry we have analyzed morbidity and mortality, level of satisfaction with medicines supply and medicines supply expenses for patients with IPAH.
Results: Criteria of level of satisfaction with drugs availability in patients with rare (orphan) diseases are suggested. Satisfaction with medicines supply is measured up against indicators and objectives of “Strategies for drug supply for the population of the Russian Federation for the period up to 2025 and a plan for its implementation”.
Conclusions: The need for further improvement of regulations of orphan diseases sphere, i.e. revision of their list and regional programs creation, is justified.
About the Authors
E. Yu. KrasilnikovaRussian Federation
Moscow
I. A. Komarov
Russian Federation
Ilya A. Komarov, MD, PhD, associated professor of Department of organizational and legal maintenance in medicine and pharmacy with clinical pharmacology course
61/2 Shchepkina St. Moscow 129110
References
1. Simonneau G, D’Armini AM, Ghofrani HA, Grimminger F, Jansa P, Kim NH, et al. Predictors of long-term outcomes in patients treated with riociguat for pulmonary arterial hypertension: Data from the PATENT-2 open-label, randomised, long-term extension trial. Lancet Respir Med. 2016;4(5):372–80.
2. 2015 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension. Galie N, Humbert M, Vachiery JL, et al. eds. European Heart Journal. 2016;37:67–119.
3. On the procedure for maintaining the Federal Register of persons suffering from life-threatening and chronic progressive rare (orphaned) diseases, resulting in reduction of the longevity or disability of citizens and its regional segment: Resolution of the Government of the Russian Federation No. 403 dated April 26, 2012 (In Russ.) URL: http://base.garant.ru/70168888/ (Accessed January 18, 2019).
4. Availability of medical care and drug provision for patients with rare diseases in the Russian Federation: realities and ways of solving problems: Medical and economic research materials (in Russ.). URL: http://euras.center/news/234 (Accessed January 18, 2019).
5. On the foundations of public health protection in Russian Federation: Federal Law No. 323-FZ of November 21, 2011 (In Russ.). URL: http://base.garant.ru/12191967 (Accessed January 18, 2019).
6. List of rare (orphanic) diseases (In Russ.). URL: https://www.rosminzdrav.ru/documents/8048 (Accessed January 18, 2019).
7. Introduction of amendments to the Federal Law on the foundations of health care for citizens of the Russian Federation: Federal Law No. 299-FZ of August 3, 2018 (In Russ.). URL: http://www.consultant.ru/document/cons_doc_LAW_304049 (Accessed January 18, 2019).
8. Annual Bulletin of the Expert Council of the State Duma Committee on Health Protection for Rare (Orphaned) Diseases. White book (In Russ.). URL: http://komitet2-2.km.duma.gov.ru/Ekspertnye-Sovety/RAbota/Orfany (Accessed January 18, 2019).
9. On the approval of National drug supply strategy in Russian Federation till 2025 and its realization plan: Order of the Ministry of Health of the Russian Federation No. 66 dd. 13.02.2013 (In Russ.). URL: http://www.garant.ru/products/ipo/prime/doc/70217532/ (Accessed January 18, 2019)
10. State Register of Medicines (In Russ.). URL: https://grls.rosminzdrav.ru (Accessed January 18, 2019).
11. Clinical Recommendations Column (In Russ.). URL: http://cr.rosminzdrav.ru/#!/schema/136 (Accessed January 18, 2019).
12. On the provision of other inter-budgetary transfers from the federal budget to the budgets of the constituent territories of the Russian Federation in 2015 in order to improve pharmaceutical provision of citizens: Resolution of the Government of the Russian Federation No. 609 dd. 19.06.2015 (In Russ.). URL: http://base.garant.ru/71096644 (Accessed January 18, 2019).
13. Unified information system in the field of procurement. Official site (In Russ.). URL: http://zakupki.gov.ru (Accessed January 18, 2019).
Review
For citations:
Krasilnikova E.Yu., Komarov I.A. Drug demand satisfaction of patients with idiopathic pulmonary arterial hypertension. Pacific Medical Journal. 2019;(4):18-22. (In Russ.) https://doi.org/10.34215/1609-1175-2019-4-18-22