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Serbians Fight for Government Funds to Treat Sick Children

A proposal put forward by a citizens’ initiative that would provide government funds for medical care for Serbian children and minors with rare or potentially terminal diseases and disorders was knocked down by Serbian officials yesterday.

At a special round-table session of the Republic Fund for Health Insurance, Serbian officials turned down the idea, to the deep disappointment of the Serbian public and netizens.

Dr. Dušan Milisavljević, one of the organizers of the initiative and president of the Board of Health of the National Assembly of the Republic of Serbia, was present at the session on August 14, 2013 to present the case for children with rare and possibly terminal diseases and their parents. The citizens’ initiative proposes that the government provide funding for Serbian citizens under age 18 for medical treatment outside of Serbia if the treatment these patients require is not available in Serbia, in particular for heart and other vital organ transplantation, something that Serbia is lacking.

Dr. Milisavljević, who is also a tenured professor at the Medical School of the University of Niš, has made this cause transparent and public on social networks and is rallying other citizens both online and offline. Immediately after the round table session, he wrote on Twitter:

The round table of the RFZO [Republic Fund for Health Insurance] has ended with no resolution as to sending children abroad for heart transplantation. There is no sign that regulations will be changed. TERRIBLE AWFUL

The state refuses to change legislature and take on the responsibility of medical treatment for children abroad http://t.co/bYEKmHnF68 [Radio Television Serbia] report @zozast @natasajutro @NataMij

As national public broadcasting network Radio Television Serbia reports in the video below, government officials cited discrepancies in the proposal that are in contrast to the Serbian Constitution as their reason for refusing to change standing regulations in the medical treatment of children. Namely, the Constitution of the Republic of Serbia states that no patient will receive preferential treatment based on discrimination, including discrimination based on age. Citizens of Serbia, however, seem to be of the opinion that providing funds to save the youngest generations of Serbian citizens, a population that is slowly but surely dwindling with one of the lowest birth rates in Europe, would not be discriminating against other citizens of Serbia, but rather making a decision based on what is right for the nation and its future in general.

A similar and related initiative, dubbed “Zoja's Law” [sr] by the parents of a recently deceased six-year-old girl named Zoja who suffered a three-year-long battle with Batten's Disease, is asking officials to also provide such funds for children with rare diseases, which often go undiagnosed for long periods of time in Serbia. “Zoja's Law”, which is a hot topic on Twitter, asks that a time limit of six months be placed on diagnosing rare diseases and disorders in children, after which the government would cover costs of either sending these young patients abroad for proper diagnosis or the cost of bringing in foreign experts for diagnosis and treatment.

Both initiatives have great support but mostly online for the time being. Dušan Milosavljević continues to talk about the issue at hand online and support seems to be on the rise:

When we talk about medical treatment abroad for children, they [the government] say it isn't possible and cite the Constitution, but when they negotiate for Kosovo? What is more important – for me CHILDREN !

— Dusan Milisavljevic (@DusanORLDusan) August 14, 2013

Snežana Jović, a nutritionist from Serbia, wrote on Twitter:

@Bobana47 It's a shame that @DusanORLDusan doesn't have wider support, the man can't do it alone when he has a gang sitting across from him.. and the media are silent… how to help.

— Snezana Jovic (@snneki) August 15, 2013

Global Voices in Serbian asked Milosavljević for a statement on Twitter as to what the next steps in pushing forward the legislative changes necessary to send children with rare and perhaps fatal diseases, often in need of organ transplantation that Serbia is unable to acquire, abroad for needed medical procedures. He responded in a telephone conversation, listing four very concrete steps to be taken that were much too long for a tweet. Here is his response to Global Voices:

Step 1 – What I have repeated daily for the past six or seven months and what is the pillar of this initiative is a change to the current Regulation (Pravilnik) of the Republic Serbia for medical treatment of patients. This procedure requires just one session during which only one sentence needs to be added to the Regulation – that the state will finance costs of medical treatment, in other words transplantation, for the citizens of Serbia [if the state does not wish to discriminate and limit this to children]. At this session, the Board of the Republic Fund for Health Insurance would bring the resolution to add this one sentence. The current Minister of Health would then have to sign the resolution and send it to the Government for adoption. This is a procedure that would take a maximum of some seven days to accomplish.

Step 2 – Signing contracts with several surgical clinics across continental Europe which would provide transplantation and treatment for our little ones. This model exists and has functioned well over the past ten years with surgical clinics in Padua and Trieste, where many of our children have been successfully treated over the past decade or so.

Step 3 – The education and training of our [Serbian] cardiovascular surgeons in the field of transplantation, a seven- to ten-year process that is necessary, as well as creating conditions in terms of equipment in our cardiovascular clinics, perhaps beginning with a clinic in Belgrade.

Step 4 – Raising awareness and educating citizens on the importance of organ donation.

Milisavljević says that he will continue with his battle with government representatives to make the above quoted four steps a reality in Serbia and also noted on Twitter that Nevena Petrušić, Serbia's Commissioner for Equality, stated the day after the proposal was turned down that:

N. P. pointed out that it is completely incorrect that laws banning discrimination based on age represent a problem in making these changes to the Regulation

— Dusan Milisavljevic (@DusanORLDusan) August 15, 2013

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