00:00 It's all about the contents of this backpack.
00:04 That's why Krasimira Obritenova left Bulgaria five years ago.
00:08 Her daughter's life depends on the medical liquid food it contains.
00:13 Pasionaria cannot be fed orally.
00:16 She gets all her nutrition through a tube inserted into her stomach,
00:20 known as a gastrostomy tube or G-tube.
00:23 For Pasionaria all this is free of charge.
00:26 It is provided by the health care system in the Netherlands,
00:29 where mother and daughter now live.
00:32 Borja Nadroganova, on the other hand, decided to stay in Bulgaria.
00:57 She feeds her daughter liquid food with a syringe and the G-tube.
01:01 Elena has had the G-tube for a year.
01:12 Her Bulgarian health insurance does not cover the cost of this medical food.
01:16 In fact, this food is not even available to buy in Bulgaria.
01:20 I get this food from Germany, through donors.
01:25 For the past ten years, Krasimira and Borjana have been among the main activists
01:32 in a parents' movement that is fighting for a more dignified life
01:36 for children and adults with disabilities in Bulgaria.
01:40 They are demanding access to medical nutrition.
01:44 Krasimira last protested at the airport on April 18, 2018.
01:50 Pasionaria and Elena have been disabled since childhood.
02:11 I don't understand why she is still hungry and thirsty.
02:15 I think she is just a little girl with a more fun development.
02:19 After 15-16 years, I have already started to see that she is not eating.
02:23 Sometimes I have days when I can't feed her through the rest,
02:27 because everything is very tight here.
02:29 These days are a nightmare, because you sit 24 hours a day with a spoon
02:34 and you give and wait and you pray that she eats and accepts something
02:37 and that she doesn't starve and that she doesn't go hungry.
02:40 Then she eats a lot of food.
02:42 In the Netherlands, Pasionaria was immediately placed in a special school.
02:46 From there, she was referred to a clinic where her esophagus was examined.
02:51 When the test results came back, it was clear that she should avoid eating
02:55 through the mouth under all circumstances.
02:58 A specialist monitors her diet and condition continually.
03:03 She is growing very intensively.
03:07 She is much calmer, she doesn't cry, she is much more communicative.
03:11 She starts to smile as a means of communication.
03:15 This is a gorgeous picture of her drawing a card for Mother's Day last year.
03:22 Krasimira says that she needs four boxes of medical food monthly,
03:26 plus the necessary accessories.
03:29 All this costs around 500 euros.
03:32 In Bulgaria, if you need to pay for a donation, it was simply impossible.
03:38 Can you tell me the name of the food website that is currently available with Fibri?
03:44 In Bulgaria, Boryana would not be able to care for her daughter without donations.
03:49 She also has to research which foods are suitable.
03:53 Antoaneta Toncheva, a Bulgarian doctor of genetics and molecular biology
03:58 living in Germany, offers advice over the phone.
04:01 I have the luxury of living abroad, in Regensburg, Germany.
04:06 And, fortunately, it turned out that we have a stock of such medical food.
04:11 First, we want to start collecting the health authorities in our country,
04:15 the latest data, how many people need medical food
04:18 and what diseases these people have.
04:21 Physicians like paediatric gastroenterologist Mila Baicheva support the cause.
04:27 It is clear that a patient with such a disease,
04:31 with an infection, pneumonia or gastroenteritis, would lead to a fatal end.
04:36 Bulgaria is the only country in the European Union,
04:39 and most likely in Europe, that does not provide reimbursement
04:43 for conditions that can occur with low nutrition.
04:47 The Bulgarian National Health Insurance Company declined DW's request for an interview.
04:53 It did, however, send a written statement saying that a working group was set up last year
05:00 to analyze how many people need medical food
05:03 and what financial resources are needed to budget the costs after 2024.
05:09 Until then, malnourished children and adults in Bulgaria have no choice
05:19 but to rely on donations and other means of support,
05:23 or to just buy a one-way ticket to another country.
05:28 For more information, visit www.bulgaria.gov
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