State neglect of dialysis patients

Limited right to work, freedom of movement and access to therapy, along with a small number of transplants, depict the difficult and worrying situation of nearly 5000 patients on dialysis in Serbia, including 29 children, announced the Dialysis Association. transplanted and patients on the "Donation is Heroism" waiting list after the "Dignity for All" panel discussion held on Thursday.

According to data from the Institute for Public Health of Serbia "Dr. Milan Jovanović Batut" from September 2024, the average dialysis patient is 62 years old.

The panel was organized with the aim of pointing out the specific challenges faced by patients with invisible disabilities, especially those on dialysis, while presenting concrete proposals for improving their position and quality of life.

Svetlana Knežević, a patient who has been on dialysis for more than a decade, explained the seriousness of the situation.

"We were particularly struck by the news about the relocation of dialysis centers from Belgrade to Batajnica. Our lives are already largely conditioned by devices, and any additional burden, such as this change, significantly complicates everyday life and impairs the quality of life, making it even more difficult," she said.

People with invisible disabilities are particularly vulnerable

Svetlana Đorđević, senior advisor at the Ministry for Human and Minority Rights and Social Dialogue, emphasized that people with invisible disabilities are a particularly sensitive population because they are at risk of remaining unrecognized.

"One of the most important tools that we promoted in the previous period is social dialogue, and we believe that it would certainly be useful to organize a social dialogue that would contribute to raising community awareness, as well as finding solutions to improve the position of people with invisible disabilities," said Đorđević.

Prof. said that the main currents of political life and economic development in Serbia leave many citizens invisible. Dr. Slobodan Cvejić, MP and president of the informal parliamentary group for improving the position of people with disabilities.

He added that "citizens with serious illnesses and unregistered disabilities are particularly threatened by the negligence of the system, although many of them with appropriate support can be active members of society and a valuable human resource."

State negligence

According to the Constitution and international treaties that Serbia has ratified, the state is obliged to ensure citizens the right to the highest possible standard of health care, noted Bishop Ilić from the Belgrade Center for Human Rights.

"Patients who reach the last stage of kidney failure and start dialysis have very little, almost no chance of regaining their quality of life and work ability, given that the number of cadaver transplants performed in Serbia in the last few years is absolutely negligible," Ilić said. .

He further emphasized that it is particularly disappointing that the state's carelessness in the previous period contributed to the dramatically low number of cadaveric transplants, considering that for three years in Serbia there has been no adequate legal framework for carrying out cadaveric transplants.

"Unfortunately, this carelessness can be shown by the number of human lives that have been extinguished and the number of patients who have become ineligible to be organ recipients in the meantime. It is also a paradox that the state has the most expenses for a nephrology patient while he is on dialysis", Ilić concluded.

The Association "Donation is Heroism" announces that it will propose a topic of social dialogue that will concern the improvement of the position of dialysis patients in the health, social and economic system.

They add that the signatures of several hundred patients from four dialysis centers that are planned for relocation to Batajnica will be forwarded to the Ministry of Health, with a reasoned request that the relocation is not considered appropriate from the perspective of the patients, nephrological recommendations and the Convention on the Rights of Persons with Disabilities, which in Article 25 mandates the provision of health services as close as possible to the communities where persons with disabilities live.