About the associationIn mid-June 2013, the Association addressed the Minister of Health of Ukraine, R.V. Bogatyreva, and the Chairman of the Verkhovna Rada Committee on Health Issues, T.D. Bakhteeva, with the following letters:
"We are reaching out to you on behalf of individuals suffering from a serious illness – pulmonary arterial hypertension, for whose benefit the public organization 'Association of Patients with Pulmonary Hypertension' was established in October 2012. Battling this disease is extremely challenging, and we practically have no hope for salvation. However, it is even more difficult for us to fight alone, as we are completely deprived of any form of government support – informational, medical, and financial.
The lack of coordination among doctors with qualified information about this disease results in most patients taking an extended period to receive a diagnosis. Typically, they discover their condition when the effectiveness of treatment has significantly diminished. Treatment often boils down to symptomatic therapy alone, with doctors mostly abandoning our patients, leaving them to cope with the disease on their own. Many medications are not yet registered in Ukraine, and the registered ones (Ventavis and Revatio) are financially out of reach for most patients due to their high cost. Lung transplantation is the only hope for salvation, but it is nearly impossible for our patients. Even those who manage to gather substantial sums through charitable donations are currently rejected by all European clinics, as Ukraine is not part of the Eurotransplant community.
We acknowledge the severity of this disease and the grim prognosis, understanding that most of us will succumb to it in the coming years, and our pleas for help may fall on deaf ears. However, the problem will persist, and the gaze of other patients will turn to you, hoping for your concern.
Urgently, we need a specialized center that brings together specialists from various medical disciplines, conducts comprehensive and qualified diagnostics, examinations, and treatments for our patients. Such a center would centralize the efforts of local specialists and provide treatment and methodological support to doctors.
We earnestly hope that Ukrainian doctors can achieve success in the treatment of pulmonary hypertension, just like their colleagues abroad.
We are also in the process of preparing a register of our patients for registration and request your consideration of the possibility of allocating life-saving medications for them.
We hope to receive your attention,
Chairman of the Board
'Association of Pulmonary Hypertension of Ukraine' Aleksandrova O.V."
The Verkhovna Rada Committee on Health Protection forwarded our letter to the Ministry of Health Protection of Ukraine, to the Department of Reforms and Development of Medical Care (the director of the department is N.K. Khobzei). This week we received the following response from the Ministry:
"The Department of Reforms and Development of Medical Care has considered your appeal, which came from the Chairman of the Verkhovna Rada of Ukraine's Committee on Health Care T.D. Bakhteeva, and informs you.
According to the information of the chief freelance specialist of the Ministry of Health of Ukraine in the specialty "Therapy," corresponding member of the National Academy of Sciences of Ukraine, Doctor of Medicine, Professor V.Z. Netyazhenko, in accordance with the recommendations of the European Society of Cardiology (2009), pulmonary hypertension is a clinical condition that unites a heterogeneous group of diseases that differ clinically and pathophysiologically, prognostically and have certain therapeutic features. This applies to pulmonary hypertension on the background of both cardiac pathology (systolic-diastolic dysfunction, damage to the valve apparatus), and lung diseases and conditions leading to hypoxia, in particular COPD, interstitial lung diseases, obstructive sleep apnea syndrome, pulmonary hypertension, association with connective tissue diseases, as well as portal hypertension, HIV infections, hematological and nephrological diseases, etc.
A separate group is pulmonary hypertension due to postthrombotic conditions with embolization of the distal and proximal arterial bed, including oncological genesis. The prevalence of primary pulmonary arterial hypertension is 10-15 cases per 1 million populations; pulmonary hypertension due to the above-mentioned diseases is more common.
Given the interdisciplinary approach, patients with an established cause of pulmonary hypertension should be treated in specialized departments, including pulmonology, cardiology, gastroenterology, cardiology centers, and AIDS centers.
"The Department of Reforms and Development of Medical Care has considered your appeal, which came from the Chairman of the Verkhovna Rada of Ukraine Committee on Health Protection T.D. Bakhteeva, and informs you.
According to the information of the chief freelance specialist of the Ministry of Health of Ukraine in the specialty "Therapy," corresponding member of the National Academy of Sciences of Ukraine, Doctor of Medicine, Professor V.Z. Netyazhenko, in accordance with the recommendations of the European Society of Cardiology (2009), pulmonary hypertension is a clinical condition that unites a heterogeneous group of diseases that differ clinically and pathophysiologically, prognostically and have certain therapeutic features. This applies to pulmonary hypertension on the background of both cardiac pathology (systolic-diastolic dysfunction, damage to the valve apparatus), and lung diseases and conditions leading to hypoxia, in particular COPD, interstitial lung diseases, obstructive sleep apnea syndrome, pulmonary hypertension associated with connective tissue diseases, as well as portal hypertension, HIV infections, hematological and nephrological diseases, etc.
A separate group is pulmonary hypertension due to postthrombotic conditions with embolization of the distal and proximal arterial bed, including oncological genesis. The prevalence of primary pulmonary arterial hypertension is 10-15 cases per 1 million populations; pulmonary hypertension due to the above-mentioned diseases is more common.
In view of the interdisciplinary approach, patients with an established cause of pulmonary hypertension should be treated in specialized departments, including pulmonology, cardiology, gastroenterology, cardiology centers, and AIDS centers.
We would also like to inform you that the issue of free and subsidized provision of medicines according to doctors' prescriptions in case of outpatient treatment is regulated by Resolution of the Cabinet of Ministers of Ukraine of August 17, 1998 No. 1303 "On regulation of free and discounted medicines according to doctors' prescriptions in case of outpatient treatment of certain groups of the population and according to certain categories of diseases."
Expenses related to the dispensing of medicines free of charge or on preferential terms are carried out through general appropriations provided for by the relevant health care budgets.
Medicinal products specified in the List of domestic and foreign-made medicinal products that can be purchased by health care facilities and institutions that are fully or partially financed from the state and local budgets, approved by Resolution of the Cabinet of Ministers of Ukraine dated September 5, 1996, are issued free of charge and at a discount. 1071 "On the procedure for the purchase of medicinal products by health care institutions and institutions financed from the budget" (with amendments), by pharmacies according to prescriptions issued by doctors of health care institutions at the place of residence of these persons.
Director of the Department M. Hobzei"