“My father-in-law received the best care, but we had absolutely no information about what we are entitled to as a family,” Lucie Vernarová described her first experience. Information about the possibilities of making difficult care easier came to the family randomly and sporadically.
“The doctor didn’t have time, the hospital was absolutely overloaded, so we didn’t know what to do,” Lucie recalled. The internet didn’t help either. In addition, the bureaucracy complained about the care, when the ZTP card, which would have made it easier for the family to travel with the sick person to the hospital, arrived six months late.
Only when Lucie wanted to thank the doctors who took care of her father-in-law did she find out about the organization Lymphom Help. It has been supporting patients with malignant lymphoma and their relatives since 2005. It helps them navigate the treatment, available support and practical issues that the disease brings.
Half a year after the death of the father-in-law, Lucie’s father was also diagnosed with the same disease. This time, however, she and her family were able to turn to the Lymfom Help organization and, according to Lucie, it was a completely different experience than when they arranged everything themselves. The organization instructed the family where and what application to submit in order to receive care allowances, or how to quickly get a ZTP card.
In addition, people who have dealt with the disease themselves in the past work in the organization and can put themselves in the situation of those who have just heard the diagnosis. “Suddenly you hear someone on the phone saying, ‘I know.’ This is what the patients and their relatives need,” thinks Lucie.
Organizations are fighting for survival
Lymphoma Help and other patient organizations, of which there are approximately 140 in the Czech Republic, are constantly struggling to cover their operating costs. “Patient organizations replace the missing capacities of the state, whether it is psychosocial support or advocacy. However, they do not receive stable support from public sources, and functioning dependent on project resources is a very uncertain ground,” said Petra Vejtrubová, member of the executive committee of Lymphom Help.
The need to create stable funding for patient organizations has been discussed in the Czech Republic since 2020. Politicians have repeatedly acknowledged this need, but a specific funding mechanism has not yet been implemented.
However, the organizations are still fighting for their survival, despite the fact that, according to the chairman of the National Association of Patient Organizations (NAPO), Robert Hejzák, the state saves tens of billions of crowns every year.
“Costs for social service and healthcare workers, whose work is covered by patient organizations, are eliminated from the state budget. With a faster return of patients to active working life, the state’s expenditure on benefits decreases and income from payroll deductions increases,” Hejzák described.
“We need systemic change and multi-source financing,” pointed out Vejtrubová. According to her, inspiration can be found, for example, in Slovakia, where people can donate two percent of their income tax directly to specific non-profit organizations.
According to Deputy Minister of Health Ladislav Ševka, a similar model has not yet been considered in the Czech Republic. The only thing that has happened is the creation of a fund of generally beneficial activities, to which health insurance companies pay up to half a percent of the collected premiums. Patient organizations can then voluntarily support from this fund. However, according to Ševka, it is precisely the voluntary nature of the contribution that is a problem.
