Vacation is over, and you are still tired?
We can decrease the burden of blood disorders with an early diagnosis enabled by a simple blood count.
Each year in Slovenia we notice an increasing incidence of blood disorders. The symptoms of these disorders are difficult to recognize and appear in all age groups, which is why it is important to discover them early. With this information, we enter into September, the Blood Cancer Awareness Month. Slovene hematologists have been continuously treating patients in time of the epidemiological restrictions, but they warn that numerous patients come to hematology and oncology clinics (too) late due to often difficult access to family clinics.
»Especially at the beginning of the epidemic, it was very difficult to reach personal physicians, and many patients found it difficult to wait in front of health centers, especially in bad weather, since we are referring to immunocompromised individuals. Patients in hospitals are also distressed that visits from relatives are prohibited,« said at a press conference Anica Kralj Štimec, vice-president of the Association of Patients with Blood Diseases Slovenia and head of the association’s non-professional psychological support program Bolnik – bolniku (Patient to Patient). At the same time, she commended the accessibility and response time of hematologists during the epidemic.
The executive director of the Slovenian Association of Patients with Lymphoma and Leukemia Kristina Modic warned about the responsibility of each individual in successfully dealing with the new corona virus, as this virus distinctly threatens the most immunocompromised groups of the population, among them patients with blood cancers:
“The fourth wave must not further hinder the population’s access to primary level health care and delay diagnoses of oncologic diseases. An individual with suspicion of cancer simply cannot afford and should not wait for a diagnosis and medical examination, as even the most modern therapies often prove helpless in case of a late diagnosis. This is why I appeal to people to monitor how they feel, be alert of long-lasting body changes or health issues, and despite potential restrictions and changes of the access to health care services find and demand medical assistance as soon as they need it. COVID-19 can represent a grave risk for immunocompromised people, and patients with blood cancers definitely fall into this group. These patients are not threatened only by COVID-19 but also and mostly by their primary disease, which is cancer. This is why I let health care authorities know that hemato-oncological patients and patients with other forms of cancer need and deserve a modern and complete treatment in a timely and accessible fashion, a part of which is also receiving a timely and quick diagnosis.”
Burden of blood disorders
In 2019, 154,000 people died of blood cancer in Europe, which is 8% of all cancer deaths in Europe1. Blood cancer and blood disorders represent a heavy burden for the patients – 82% of patients with blood cancer have symptoms that hinder their everyday life2. The total economic cost of all blood disorders and blood cancers in Europe is €23 billion3.
This year in September we raise awareness of the burden of blood disorders in an extensive campaign we organized with the Association of Patients with Blood Diseases Slovenia and the Slovenian Association of Patients with Lymphoma and Leukemia, L&L, backed by expert support of hematologists. The campaign was powered by Novartis.
“There are many types of blood disorders, and their signs and symptoms are different. Because they derive from hematopoietic organs and hematopoietic stem cells, sooner or later there are alterations in the blood count, which quickly reflects on the health and wellbeing of the patient. This can lead to anemia, which makes us tired, sleepy, and unproductive. We can notice an increased frequency of infections, spontaneous bleedings, even excessive bleeding or thrombosis. When we notice something similar in our health and wellbeing, it definitely makes sense to visit a doctor and ask for a medical examination and a laboratory blood test,” explained Prof. Irena Preložnik Zupan, PhD, internist and hematologist at the Department of Hematology of the Internal Clinic at the University Medical Centre Ljubljana. Prof. Samo Zver, PhD, internist and hematologist, Head of the Department of Hematology of the Internal Clinic at the University Medical Centre Ljubljana, warned about the key role of family physicians in a timely discovery of blood disorders and about the significance of their continuous training.
Some blood disorders also affect children.
“The process and symptoms of blood disorders of children are similar to those of adults. The most common symptoms, which are cause for alarm, are pale skin and fatigue, which are a consequence of anemia, frequent infections due to disorders in the white blood cell formation, and increased propensity for bleeding due to disorders of platelet production. In such cases the child must be examined by a pediatrician and a basic blood count must be performed,”
said Prof. Janez Jazbec, PhD, a specialist of pediatric hematology-oncology at the Department of Oncology and Hematology, Division of Pediatrics at the University Medical Centre Ljubljana.
The consequences of COVID-19 make treating lymphoma more difficult
One of the best-known and most common blood disorders is the lymphoma. In the last months, an increased number of patients in the late phase of the disease has been admitted to the Lymphoma Department at the Institute of Oncology.
“More patients arrive in whom the disease is more spread than what we were used to seeing. Patients with diagnosed lymphoma, who have been positive on covid, where not able to start the treatment, despite the clear diagnose of lymphoma. Treatment is also less successful than it would be if we were dealing with earlier phases of the disease, there are more complications; the patients are more tired and fragile. Some postpone visiting the doctor and think that enlarged lymph nodes will get better because they are not willing to deal with the protocols to enter the health center; many doctors communicate by email, which may be late or gets lost ... Patients avoid health centers and wait until it gets really bad. Matters are further complicated by increased body temperature, which is one of the basic symptoms of lymphoma and at the same time one of the signs of COVID-19. In primary health care, a patient with increased temperature is sent for testing, which is a problem in regard to treating lymphoma because it represents loss of time. I think the consequences of COVID-19 regarding oncology patients will reveal themselves later, not immediately. The death rate will increase for solid cancers as well as hematology cancers,” warned Jana Pahole, internist and oncologist at the Department of Treatment of Lymphoma in the Medical Care Sector at the Institute of Oncology Ljubljana.
Progress in treatment brings about hope
In the last 30 years, there was major progress in the treatment of hematologic diseases, as researchers daringly and relentlessly seek breakthrough therapies for blood cancer and blood disorders.
“In the field of hematology, numerous studies are taking place in the world. New medications are produced each year, increasingly oriented towards genetic targets or the immune system and an individual approach to each patient. Patients definitely have reasons to be optimistic,” explained Prof. Preložnik Zupan, PhD.
“Even children who get sick with serious blood diseases in Slovenia have access to the most modern therapies,” said Prof. Jazbec, PhD.
Advances in hematological treatments, from targeted therapies to cell and gene therapy, and immunotherapy, give so much cause for hope. Numerous clinical trials into investigational therapies across multiple blood cancers and serious blood disorders are taking place, and Novartis actively participates in these trials. Novartis is also working with relevant authorities across Europe to further develop the regulatory and reimbursement approval processes and frameworks needed to bring unique, one-time treatments such as CAR-T cell therapy to patients in need as quickly as possible.
Invaluable assistance and support for patients
Patients with blood diseases in Slovenia get support from numerous programs of the Association of Patients with Blood Diseases Slovenia and the Association of Patients with Lymphoma and Leukemia, L&L.
The Association of Patients with Blood Diseases Slovenia performs the program Bolnik – bolniku (Patient to patient), a non-professional psychological assistance and support program, which takes place in hematology departments at the University Medical Centre Ljubljana and Maribor and at the General Hospitals Novo mesto and Slovenj Gradec. All patients getting treated at the department and their relatives can communicate with a recovered patient. Psychological support is also active during the epidemic. The program is performed by nine recovered patients.
“The possibility to talk to someone who already dealt with and defeated the disease has great psychological importance and gives the patient the will to further face the disease and its challenges and have greater hope of recovery,” explained Anica Kralj Štimec.
September, Blood Cancer Awareness Month
In September, the Blood Cancer Awareness Month, we above all raise awareness of the burden of rare blood disorders and the significance of their early discovery. September 9 is the world day of myeloproliferative neoplasms (MPN: group of rare chronic blood cancer diseases, in which the patient’s bone marrow does not function properly); September 22 is the world day of chronic myelogenous leukemia (CML: too many abnormal white blood cells are formed); the week from September 20 to September 24 is dedicated to raising awareness of immune thrombocytopenia (ITP: the most common acquired blood clotting disorder). Every year, 218 to 276 people fall ill with these diseases in Slovenia.4, 5
In September we mark the World Lymphoma Awareness Day (September 15) and World Marrow Donor Day (third Saturday of September, which this year falls on September 18).
- Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. The Lancet (doi:10.1016/S0140-6736(20)30925-9). https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30925-9/fulltext#supplementaryMaterial
- Blood Cancer in America Survey; Blood Cancer 2018
- Economic burden of malignant blood disorders across Europe: a population-based cost analysis. Lancet Haematology (doi:10.1016/S2352-3026(16)30062-X). https://www.ox.ac.uk/news/2016-08-04-healthcare-costs-blood-cancers-are-double-average-cancer-costs
Košnik M. Štajer D. Interna medicina. 5. izd., str. 1176-1179. Medicinska fakulteta Ljubljana, Slovensko zdravniško društvo; Buča, 2018.
Spletna stran Mednarodne zveze ITP. Dostopna na https://www.globalitp.org/ Zadnji dostop 1.9.2021
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