Interview with Evgenia Aleksandrova, Patients’ consultant, Chairperson of the Association of Cancer Patients (APOZ), Patient advocate and consultant certified by ECCO, ESMO, ECPC, UICC, EUROPA DONNA, National Representative of the European Breast Cancer Coalition EUROPA DONNA, Contact person for the CANCER MISSION of the HORIZON EUROPE Framework Program
Mrs. Alexandrova, what does the modern picture of cancer look like through the patient’s eyes?
The picture of cancer will always look embarrassingly frightening to the patient and his loved ones, no matter how modern. Hardly anyone doubts that. It is for this reason that care for cancer patients needs to be enriched and expanded in the direction of information, navigation and personal assistance in order to give society time to get used to the understanding that during the patient’s journey there is a lot of supportive care, clear rules and organization of treatment. Over time, this will reduce the primary burning anxiety in patients and their loved ones and will allow for their earlier personal mobilization in favor of the healing process.
Do you think that the measures taken globally and nationally will be effective (European cancer plan, national cancer plan)?
Let’s clarify what effectiveness we expect from these measures! If we consider the reduction of the public burden of cancer – costs, loss of life, social burden – definitely YES! I expect these global measures to limit late diagnosis and have a positive effect on the life expectancy of patients. But any anti-cancer plan must reflect and ensure compliance with human, seemingly non-medical needs of the patient. Supportive care most often increases the results of timely and effective treatment, maintains the patient’s spirit and fully involves him in the healing process. Awareness that he is part of the treatment team motivates the patient, increases his trust in the medical staff, engages him in his own healing with a conscious responsibility and striving for control and victory over the disease.
What do people with cancer need today?
First of all, information – about the fact that there is organized cancer care, about its structure, about the right path of the patient in this segment of the health system, they need essential list of specialized cancer treatment facilities and experts in various medical specialties. In addition, the patient needs professional psychological assessment and assistance, as needed, a clinical social worker, positive examples of successful patients, a supportive peer environment, navigation and accompaniment throughout the treatment process. It is not insignificant, but it is achievable to organize and provide this type of care. There are enough examples and good practices to follow.
And what are the needs of people who have survived cancer after completing their treatment? Are they adequately addressed?
Wonder question! Usually, patients who have completed treatment are subject to medical follow-up. But it is not the subject of public attention how these people continue their lives, which have turned in an unusual direction with the onset of the disease. Some of them lose their jobs, others experience cataclysms in their family relationships. In practice, they are expected to prove that they are complete again and have the right to move forward without being reminded at every turn that they have had cancer. They are subject to discrimination in every important personal decision – to change their job, to buy a home, to develop in another professional field. Clear regulation on these issues is needed, as well as an element of the anti-cancer plan!
Do you believe that modern technology can help the lives of people with cancer and people who have survived cancer? Do you know examples in this regard (eg mobile applications, technological innovations in diagnostics, use of artificial intelligence, etc.)
Basically yes. New technologies occupy an increasing part of the conditions in which we live and exist. They are expected to improve our functioning in various aspects. But with regard to cancer patients, living contact with a human being will remain unparalleled, and for a long time to come people will receive the most tangible help and support in this way.
Interview taken by Alexander Milanov, Program Director at National Patient’s Organization, Bulgaria