Ukrainian Psoriasis Association - a connecting link between patient and doctor

Ukrainian Psoriasis Association - a connecting link between patient and doctor.

Oleksandr Litus, Prof. PhD., President of NGO «Ukrainian Psoriasis Association» Kuzma Khobzey, Dr., Secretary of NGO «Ukrainian Psoriasis Association» Kyiv, Ukraine

The problem of psoriasis in Ukraine is far from final resolution. Official statistics on the prevalence of psoriasis in Ukraine is 0,21%. But if you extrapolate an international statistics of 2,5-3% to the population of Ukraine, it will be more than 1 million people suffering from psoriasis. Under conditions of insufficient budget financing the provision of specialized medical care for those suffering from psoriasis is severely limited at the modern stage. Awareness of the patients about their illness is low, and health education among the population almost doesn’t exist. In addition, a huge number of those who propose non-evidence based medicine services continue to parasitize on psoriasis problem.

The purpose and mission of the Association is to unite psoriasis patients, physicians and all those who care about this problem in order to improve medical care for patients with psoriasis and to improve their life quality. For fulfillment of these tasks, the Association is engaged in social work aimed at both patients and doctors, and also at general public. Under the patronage of the Association the following conferences are being held: Kiev Dermatology Days (www.kyivderm.org), the 1st International Congress of Euro-Asian Association of Dermatovenereologists (www.eaad2011.org); also it organizes round tables, provides mass-media activities, and the thematic website has been launched and maintained (www.psoriasis.in.ua).

Ukrainian Psoriasis Association was founded in 2008 and is registered with the Ministry of Justice of Ukraine as a whole-national non-govermental organization. At the moment the Association consists of more than 1300 members in 18 local offices in all regions of Ukraine. The Association is a member of International Federation of Psoriasis Associations (IFPA, www.ifpa-pso.org), European Federation of Psoriasis Associations (EUROPSO, www.europso.eu), and of Psoriasis International Network (www.psoriasis-international.org). Since 2009 Ukrainian Psoriasis Association joined an IFPA initiative and organizes the World Psoriasis Day in Ukraine (http://psoriasis.in.ua/comm_day.php).

Despite its small age, Ukrainian Psoriasis Association has established itself as an influential social organization. The model of Association with membership for both patients and physicians clearly paid off, by allowing a better understanding of common problens, and giving more constructive ways of their solution.

Due to the activities of the Association, a great attention of mass-media, patients and physicians was drawn to the psoriasis problem. With the active assistance of local associations from different regions of Ukraine, centers for psoriasis treatment were established, which use all modern approaches for psoriasis treatment including phototherapy and biological therapy. Ukrainian Psoriasis Association strongly supports activities of regional centers for psoriasis treatment. At the moment there are more than 15 such centers, but their number is not sufficient for such a big country as Ukraine. There is still a problem of inaccessibility of modern, safe and effective methods for psoriasis treatment for those who requires them in Ukraine. Some methods are not available due to the territorial reasons (phototherapy), others are not available due to their high cost (biological therapy). New phototherapy cabinets appear every year, but the introduction of biological therapy into wide practice is much more complicated. In Ukraine the annual cost of biological treatment is about 15000 euro, when the average salary is about 250 euro (as for 2010). There is no reimbursement in Ukraine for psoriasis treatment, and all expenses are covered by the patient.

In 2010 the concept of state program for the improvement of the quality of medical care for patients with psoriasis was developed. The program included opening of the psoriasis treatment centers in regions, which do not have them, as well as expensive biological therapy treatment for those who need it. At the moment the program concept passes public hearings (http://www.moz.gov.ua/ua/portal/Pro_20101229_0.html) and we hope that even under conditions of limited financing of medical industry, the program will be approved by the goverment.

The problems with health care for psoriasis patients in Ukraine are not unique – similar problems are more or less applicable to other countries of Eastern-European region. Several countries have succesfully overcome them, several are only at the beginning of this path. This is why it is crucial to improve communication, to share experience for more effective solution of psoriasis problem.