About us

We are a citizens’ association representing patients with haematological malignancies, what are tumour diseases (types of cancer) of blood, haematopoietic progenitor cells and lymphatic system. Our mission is to actively represent and promote interests of patients with such disorders with regard to exercising their rights to healthcare leading to the prolongation of life and improvement of its quality. We are prepared to listen to you, seek answers to your questions and help you to receive the best possible treatment.

If you need help, support or advice, or if you are interested in what we do, please contact us at:

e-mail: info@hematologickypacient.sk

address: Združenie pacientov s hematologickými malignitami, Nezábudková 52, 821 01 Bratislava

phone number: (+421) 902 688 121

What problems Slovak patients with haematological malignancies face

Treatment availability. Many innovative drugs for treatment of cancer are not included in the list of medicines paid by the public health insurance (so-called list of categorised medicines), because they are too expensive. A medicine not included in the list of categorised medicines can be paid from the health insurance only with the consent of the health insurance company. There is no legal claim or entitlement for the consent of the insurance company to be granted. If the insurance company disagrees with payment, the patient cannot receive treatment. At the same time, the effectiveness of said medicines is confirmed not only by research, but also by actual clinical practice in developed countries. Following medicines are also not included in the list of categorised medicines: Imnovid for treatment of multiple myeloma, Jakavi for polycythaemia vera and myelofibrosis, Revlimid for treatment of myelodysplastic syndrome -5q, Bosulif for treatment of chronic myeloid leukemia, Arzerrafor chronic lymphocytic leukemia. For more information go to our website section Treatment availability.

Weak legal awareness. Many patients are not aware of their rights regarding the provision of healthcare and/or are not able to assert such rights in contact with healthcare providers. Unfortunately, we can find even today patients who were informed about their diagnosis in a busy corridor; patients who did not get any explanation as to why and how they should be treated; patients who were despite their wishes dying in the healthcare facility alone, without their families. All that despite the fact that legal regulations guarantee patients a whole range of rights. It is important to know them and insist on them. For more information go to our website section Legal advice.

Difficulties with adhering to the treatment regimen. Medicines administered by the patient orally, i.e. through mouth, play more and more significant role in the cancer treatment. Such oral administration is simpler, faster, less painful and more comfortable for the patient than to have an injection applied in the hospital. On the other hand, such treatment places more responsibility on the patient to administer the medicine correctly, i.e. in prescribed dosage and prescribed manner. Failure to adhere to the treatment regimen can lead to bad clinical results and overall deterioration of patient’s condition and life quality. If the patient fails to take the medicine as s/he should or if s/he fails to take them at all, wasting of already limited healthcare resources occurs. At the same time the treatment availability for other patients in the future grows more difficult. For more information go to our website section Treatment adherence.

Lack of up-to-date and comprehensible information. Available information about haematological cancer is from the perspective of patients either too scholarly or too simplified. Patients and their relatives are often unable to choose from the number of sources, unable to assess which one is trustworthy and up-to-date. Scientific knowledge in the field of cancer advances fast, new medicines appear, many standard procedures used in the past get obsolete. The treating physician often does not have enough time or will to answer all questions of the patient. For more information go to our website section Haematological malignancies.

What we do for patients

We help patients to get to the right treatment. Our website and information materials contain current information about individual treatment options of individual diseases, as well as whether such treatment is or is not paid by health insurance companies and under what conditions. We prepare opinions about treatment that is not paid and send them to health insurance companies and the Ministry of Health. Our opinions contain medicinal and legal arguments as to why patients need insurance companies to pay for such treatment. We also represent individual patients who need treatment that is not categorised, i.e. not paid from the health insurance. We address the health insurance companies on behalf of such patients and seek also other solutions how to make treatment available for the patient.

We educate patients about their rights. Our website and information materials explain in detail all rights of patients as to receiving healthcare. Patients can learn from them how and by whom they should be informed about the disease and treatment, how should healthcare providers behave to them, matters regarding the medical records and what to do in case they are dissatisfied with the way the healthcare is provided to them. We provide patients also legal advice – they can find in the Legal advice section on our website practical advice and guidance on how to deal with financial and social difficulties caused by the disease.

We help patients with the adherence to their treatment regimen. Patients can turn to us with any difficulties or questions regarding the administration of medicines prescribed to them by their physician and we will provide them information and support required for taking medicine correctly.

We provide patients information service. Patients and their relatives can turn to us with any questions regarding the disease, individual treatment options, but also medicines or substances still in the research phase. We cooperate with top Slovak haematologists and monitor current scientific works regarding the treatment and research of haematological diseases. We publish all important news about haematological malignancies on our website and information materials which we send free of charge on request, either in printed or electronic form.

How to support us

We perform all activities for the benefit of patients free of charge. Our activities are funded from donations and grants from organizations and individuals and from the income from our eshop.

You can support us by:

  • donating any sum of money by means of the "Financial support" link on our website

  • remitting any sum of money to our bank account SK43 1100 0000 0029 4400 0461

  • shopping through our eshop.

You can also help us by becoming our volunteer and helping us to increase awareness about haematological malignancies by distributing our materials and opinions among your friends and acquaintances.

How to become a member

We are a citizens’ association open to any individuals and legal entities from both the Slovak Republic and abroad. Patients with haematological cancer disease, their relatives, friends, as well as other people or organizations sympathising with our aims - they all can become our members. It is easy to become our member. Just fill in this form and send it to: Združenie pacientov s hematologickými malignitami, Nezábudková 52, 821 01 Bratislava. Membership in the Association of Patients with Haematological Malignancies is free. Individuals or organizations that already are members of other citizens’ associations for patients can also become our members. Anyone can be a member of any number of citizens’ associations. The benefit of the membership in the association is that every member is entitled to attend the meeting of the most important body of the association, called the general Meeting. The general meeting approves the budget and plan of activities of our association and once in three years elects the presidium which manages the association. Extensive membership basis gives strength to our voice. The more members we have, the more seriously our opinions concerning treatment availability or other materials prepared on behalf of patients are taken. Membership in our association is not a condition for making use of our services. We are here for all patients with haematological cancer diseases, without regard to whether they are our members or not.

Chairperson

JUDr. Katarína Fedorová, PhD.

She graduated from her master’s degree study at the Faculty of Law of Trnava University and from her doctoral studies at the Faculty of Law of Masaryk University in Brno. She worked as a lawyer in the Legal Aid Centre providing legal aid to people in material need. She cooperated in 2012 - 2015 with the citizens’ association Slovak Myeloma Society as a lawyer and coordinator of projects for patients. She has been leading legal advice service for cancer patients available on the website of the Foundation for Help to Cancer Patients [Nadácia na pomoc onkologickým pacientom]www.npop.sk and legal advice service for patients with multiple myeloma on the website www.mydialog.sk. She prepares the magazine Krvinka, which brings interesting information to patients with haematological malignancies from the field of medicine, law, psychology and lifestyle. She works as the lecturer of educational seminars in the field of medical law for physicians with various specialisations and as the lecturer of medical law at the Medical Faculty of the Komenius University in Bratislava. 

 


More
Join us on Facebook
Finančná podpora

Aj malým príspevkom nám pomáhate prinášať pacientom zrozumiteľné a aktuálne informácie a presadzovať práva pacientov na kvalitnú zdravotnú starostlivosť.