Blood cancers are diagnosed in approximately 6 000 people in Poland every year. Advances in medicine have increased the life expectancy of patients, but at the same time increased the need to support them in the face of comorbidities and a health care system that is not always transparent. HaematoKoalition, an initiative bringing together 4 organisations: OnkoCafe Foundation - Together Better, Onkofoundation Alivia, PARS Oncology Movement Association and Wieslawa Adamiec Carita Foundation, addresses these challenges, aiming to improve patients' quality of life.
Poland, being one of the fastest ageing societies in Europe, faces a huge challenge in the organisation of healthcare. The increasing number of seniors, multi-morbidity and the need to adapt the system to modern therapies mean that blood cancers, which most often affect seniors, are becoming an increasingly important challenge facing society and the healthcare system.
One solution that could ultimately improve the situation of haematooncology patients is to National Haematology Network (NSH). The initiative aims to improve the care of patients with blood diseases. However, KSH is still waiting for full implementation.
HematoCoalition - association of 4 organisations: OnkoCafe, Carita, Alivia i PARS Oncology Movement - fills a gap where the system is not always transparent and sometimes leaves patients without the support they need.
"Our aim is not only to support patients in their fight against disease, but also to explain the intricacies of the system and show pathways to take better care of their health," - he says Anna Kupiecka, President of the OnkoCafe Foundation - Together Better.
OnkoCafe - patient support
OnkoCafe Foundation - Together Better is the leader of the HaematoKoalition, and one of the organisation's main areas of work is to support blood cancer patients and their families by organising meetings where, among other things, consultations with doctors are possible.
"Our mission is to help patients understand the disease, but above all to ensure that they are not alone in it," says Anna Kupiecka.
Among OnkoCafe's latest activities for blood cancer patients, it is worth noting, for example, a series of haematooncology workshops for patients. The first event in this series took place on 13 November at the Ludwik Rydygier Specialist Hospital in Kraków. Further meetings are planned in:
- Warsaw, 14 December 2024. at the Focus Hotel;
- Gdansk, 15 December and the University Clinical Centre,
- Lublin (exact date to be announced shortly).
During these meetings, patients will have the opportunity to hear lectures from experts in haematooncology and cardiology on topics such as:
⦁ haematologist: issues related to multimorbidity among patients with blood cancers using lymphoma and chronic lymphocytic leukaemia (PBL) as examples;
⦁ cardiologist: Cardiovascular burden in haematooncological treatment with examples of lymphoma and chronic lymphocytic leukaemia (PBL).
Integration and physical activity as a form of support
The Wieslawa Adamiec Carita Foundation focuses on activities that support both education and the integration of the patient community. One of the most important events of 2024 was 4th Rally for Health, which gathered 440 participants. In total, they overcame 8,500 km.
"The rally showed how much we can achieve together by combining education, integration and physical activity. It is also an opportunity to promote awareness of preventive health care," emphasises Lukasz Rokicki, President of the Carita Foundation.
In the health zone of the rally, participants could benefit from free examinations, consultations and gain knowledge about blood cancer prevention and treatment. The HaematoKoalition, as a partner of the event, prepared a special information stand. It also included an educational stand Pink Patrol, an OnkoCafe initiative focusing on breast cancer prevention.
In 2024, the Carita Foundation also carried out other important initiatives, including:
- Patient Academy in Lublin, Wrocław, Gdańsk and Kielce, during which the latest treatment methods for lymphoma, plasmocytic myeloma and chronic lymphocytic leukaemia were discussed;
- active participation in European Haemato-oncology Patient Forumwhere key issues relating to plasmocytic myeloma, leukaemia and lymphoma were addressed.
In addition, the Foundation has launched an educational portal for patients with Waldenström macroglobulinaemia: macroglobulinemia.co.uk.
Holistic approach to the care of haemato-oncology patients
Another of the organisations forming the HaematoKoalition, Onkofundacja Alivia, has focused on expanding the knowledge base on blood cancers in 2024. Publications on innovative therapies, such as CAR-T or asciminib, and their availability in Poland, help patients to better understand modern treatments. Collaboration with Professor Krzysztof Giannopoulos, President of the Polish Society of Haematologists and Transfusiologists, has resulted in updates to the Oncoindex indicating gaps in the reimbursement of oncology drugs. In addition, Alivia organised 66 collections to financially support patients in the treatment of blood cancers.
The PARS Oncology Movement Association, on the other hand, implemented the project 'Heart under care,' offering patients with chronic lymphocytic leukaemia (PBL) free cardiology consultations in 10 cities in Poland. Through this initiative, patients had the opportunity to learn more about the impact of cancer therapy on the cardiovascular system and the importance of comprehensive cardiac care in the treatment process. During the meetings, participants received educational materials and were able to seek advice from specialists.
Education and promotion of knowledge
The HaematoCoalition, as an association of 4 organisations supporting patients with blood cancers, conducts a range of education and awareness activities, including:
- publication of guides such as 'Let's talk about lymphoma';
- the organisation of webinars, available on YouTube or Facebook;
- educational events with experts.
"Education is the key to a better understanding of the disease and treatment options, both for patients and their families," - Anna Kupiecka emphasises.
More information on current initiatives can be found on our Facebook profile: HematoCoalition.