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About 5 to 7 million people in Turkey are battling rare diseases such as SMA and ALS. Households with rare diseases have a hard time covering treatment costs. According to research by the Association for Health Economics and Policy (SEPD), one in every 2 patients is forced to travel an average of 573 km because there is no necessary treatment or specialist doctor where they live.
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İSTANBUL (TR) - Life-threatening, genetic, chronic, care-demanding and low-frequency types of diseases, such as SMA and ALS, are defined as rare diseases. Of course, Rare Diseases in Turkey are not limited to them. It is estimated that about 5 to 7 million people have rare diseases, which can be detected in Turkey, where rare diseases are common, mainly due to inbreeding and different ethnic structures.
The Association for Health Economics and policy carried out a study entitled “Out-of-pocket health expenditures of households living with rare diseases” with the rare Network in order to examine the difficulties experienced by individuals with rare diseases, especially economically. According to the results of the study announced on February 28, Rare Diseases day, 39% of participants said that they could not access treatments related to their rare diseases in public hospitals and had to go to a private hospital, 35% said that they could not get medication due to high prices and 47% said that they could not get any services. 56% of participants said that there was no necessary treatment service or specialist doctor where they lived, and they traveled an average of 573 km to do so. Especially in the Eastern and Southeastern Anatolia regions, there have been great problems with access to treatment.
President of the Association for Health Economics and Policy, who made a statement about their research, Dr. Güvenç Koçkaya, " as a result of our research, we see that households with rare diseases in Turkey spend a large part of their income on expenses for the disease and experience serious economic problems. Our data shows that the average annual income of a household living with a rare disease is $ 41,489, and the average annual out-of-pocket spending associated with a rare disease is $ 12,510. This result means that participants devote 30% of their average annual income to expenses associated with their rare disease. But its economic impact is much higher, especially when the social burden is also taken into account." said.
According to the survey study, 58% of respondents have to be fed special foods, and 73% pay for it from their own budget. When the total out-of-pocket spending associated with the rare disease is examined, private nutrition spending ranks first with a share of 25.86%. According to this, in the last 1 year, an average of 3,303 TL per household has been spent on special nutrition. It %16,91 with transportation/accommodation/dining, %14,88 with medical and non-medical equipment and supplies, %drug 12,11, %7,65 with patient care,%6,94 laboratory and imaging tests, %5,62 with hospitalization,%5,09 visit with a specialist physician, %with traditional and Complementary Medicine and 4,49 %0,45 you are watching with emergency services.
Association for Health Economics and Policy, Secretary General Gulpembe Oguzhan “according to Turkish Statistical Institute (TUIK) data, in 2019, 2,434 TL per person health spending is also mentioned if we take reference to the survey results, it can be said that almost 6 times as much and out-of-pocket health spending is made in individuals with rare diseases,” he says. The economic burden of the disease increases even more when total loss of income is added to their total out-of-pocket spending. When evaluated for all participants,the average economic burden per household of rare diseases was $ 22,796.11.
The survey results also focus on participants ' use of drugs for rare diseases. Vice President of the Association for Health Economics and Policy and Professor of Hacettepe University Dr. "According to our research, 75% of participants use drugs in relation to their treatment, while 43% pay for it. It is noted that 32% of orphan drugs used in rare diseases do not have access in Turkey, and only 48% of drugs that have access are covered by reimbursement,” he says. According to the report, looking at the expenses that patients spend out of their own pockets for drugs that are not covered by reimbursement, it is seen that in the last 1 year, an average of 1,657 drug expenditures per household were made.
Contact: Tülay Genç | [email protected] | +31 30 799 6022