Věra Duždová Horváthová, activist, artist, author and Romani community member, is battling a serious illness - her treatment will cost millions, a public collection is now open to aid her
The activist, artist, and author Věra Duždová Horváthová is facing a serious illness that causes tumors to form repeatedly in her body. Her condition has deteriorated so much after an unsuccessful surgery that further operations will no longer be possible.
Her only chance now is treatment with the modern drug Welireg, which is not covered by Czech public health insurance. Her doctor has therefore requested exceptional reimbursement, but the result of that request is not yet known.
In the meantime, a public collection for her has been announced, the aim of which is to cover her annual treatment costs of over CZK 7 million [EUR 280,000]. Forty-two-year-old Věra suffers from a rare genetic disease called Von Hippel-Lindau syndrome that causes tumors to form in various parts of the body..
She has been struggling with the diagnosis since she was 26. She has undergone several surgeries on her brain and spine in the past, but each subsequent procedure has yielded significant health limitations and has required long-term recovery.
Her last operation, which she underwent in July 2024, went badly and further surgery is no longer possible. She is currently bedridden, with a nurse and assistant helping her at home every day.
She goes to rehabilitation twice a week. Doctors recommend therapy with the drug Welireg, which could slow or stop the growth of the tumors.
That drug is not covered by Czech public health insurance and its price is unaffordable for most patients – monthly treatment costs around CZK 600,000 [EUR 24,000], so the annual amount is more than CZK 7 million [EUR 280,000]. It is not yet clear whether the request for exceptional reimbursement that has been submitted by her doctor will be granted.
“I cannot be a pessimist. I tell myself I’m just one patient of the million they handle and they must have an awful lot to do. Then I see my son, though, and I hope it will turn out well. He is the light of my life, he is my reason to undergo all of this,” Věra Duždová Horváthová told news server iDNES.cz.
The son she and her husband are raising is adopted and will turn five this year. Věra is a well-known figure in the Czech and international civic and cultural space.
She graduated from the Academy of Fine Arts in Prague, also studied at FAMU, and has been involved in a number of artistic projects at home and abroad. Her works have been presented, for example, at the DOX Center for Contemporary Art, the AVU Gallery, the Ministry of Culture of the Czech Republic, and abroad – in India, Berlin, Strasbourg, and Graz.
Her artistic and literary work focuses on Romani identity, cultural justice, and human rights. She regularly contributes to the magazines Host, RESPEKT, Romano voďi, and the literary online portal H7O.
Věra Duždová Horváthová (PHOTO: Petr Zewlakk Vrabec)
She is also a member of the art-activist group Romane Kale Panthera, which uses art to address pressing issues related to discrimination, violence, and stereotyping of the Romani minority. She founded the group together with the Slovak artist Tamara Moyzes and the Czech Romani artist David Tišer.
Her work and public activities are respected both in the Romani community and in the wider cultural public. The proceeds from the collection for the treatment of Věra Duždová Horváthová will be used exclusively to pay for healthcare, targeted treatment, and supportive therapies.
The organizers of the collection are appealing for public solidarity. “Your support has real meaning. Every contribution – small or large – helps Věra gain hope, time, and a chance to continue fighting this insidious disease,” reads the text of the collection published on the Znesnáze portal.
