Around 10,000 people in Poland are living with multiple myeloma, while a further 2,000–2,500 patients receive the diagnosis each year. The disease can develop for a long time without characteristic symptoms and has a relapsing course, which means that patients require continuous treatment and specialist care. In practice, this often means a life organised around therapy and uncertainty about how the disease will progress. The scale of the problem and the everyday reality of patients are highlighted by the campaign “1 Disease. 10,000 Lives”.
“Patients with multiple myeloma require continuous specialist haematological care and hospitalisation as part of one-day treatment, once a week and sometimes once a month. In any case, it means constant contact with a haematology ward. Patients live with uncertainty about the further course of the disease and treatment, because the disease is relapsing,” Agnieszka Szymczyk, a haematologist at the National Medical Institute of the Ministry of the Interior and Administration in Warsaw, told Newseria.
Multiple myeloma is the second most commonly diagnosed blood cancer in Poland and accounts for a significant share of cases in this group of diseases. Around 10,000 patients currently live with it, and another 2,000–2,500 cases are diagnosed every year.
Multiple myeloma is a cancer of the haematopoietic system that originates from plasma cells in the bone marrow. In the course of the disease, these cells multiply uncontrollably, leading, among other things, to bone damage, anaemia, immune system disorders and kidney failure. The disease develops slowly and may remain hidden for a long time, while its symptoms — such as back pain, chronic fatigue or deteriorating test results — are non-specific and are often attributed to other conditions.
“Patients diagnosed with or suspected of having multiple myeloma are referred to our clinic by various specialists. They come from neurologists and neurosurgeons, because the first symptom may be back pain; from nephrologists, where the first symptom may be kidney failure; or from family doctors who detect, for example, anaemia in a peripheral blood count,” Szymczyk explained.
Multiple myeloma mainly affects older people. The median age at diagnosis is around 70, and most patients are over 50. As the population ages, the number of patients is expected to increase, placing an additional burden on the healthcare system and increasing the need for multidisciplinary care.
“The dominant group consists primarily of patients who often have multiple comorbidities and health burdens, and who require not only haematological care, but also multidisciplinary specialist care,” the haematologist noted.
At the beginning of the 21st century, the prognosis for patients was much worse than it is today. Progress in treatment has been driven mainly by the introduction of new groups of drugs that target different mechanisms of the disease. Treatment is provided in specialised haematology centres under drug programmes, and therapeutic regimens are adapted to the patient’s condition and the course of the disease.
One of the key challenges remains access to the most modern therapies.
“From my perspective and that of my colleagues, the current drug programmes are insufficient. Patients in Poland are waiting for reimbursement of CAR-T therapy and for reimbursement of belantamab in combination with classic drugs, so these needs still exist,” Szymczyk emphasised.
Modern therapeutic approaches include targeted therapies and treatments directed at the BCMA antigen, which in clinical practice allow for longer disease control. These include both CAR-T cell therapies and drugs such as belantamab mafodotin used in combination with other medicines.
From the patients’ perspective, however, the disease means not only successive lines of treatment, but also long-term functioning with limitations caused by the disease itself and by the side effects of therapy.
“Multiple myeloma is a relapsing disease and remains incurable, which is why patients face many challenges, because sooner or later the disease returns. We have to deal with challenges such as access to therapy and the fact that patients cannot function normally. They also have to cope with the side effects of treatment itself. As an organisation, we try to show how it is possible to live with this disease,” said Łukasz Rokicki, president of the W. Adamiec Carita Foundation.
The importance of education and raising public awareness is emphasised by the “1 Disease. 10,000 Lives” campaign, carried out as part of the global Myeloma Action Month initiative. Its elements include information activities and symbolic actions in public spaces.
“As the Carita Foundation, we joined the global initiative and, together with 40 other countries and the International Myeloma Foundation, decided to do something that would show what myeloma is through an awareness campaign involving the illumination of remarkable places around the world. These include the Sydney Opera House, Rockefeller Center in New York, and the Palace of Culture and Science in Warsaw,” Rokicki explained.
In previous years, landmarks such as Niagara Falls, the Empire State Building and the Sydney Opera House took part in the initiative. This year, Warsaw joined the global map of activities for the first time.
“In March, we illuminated the Palace of Culture and Science in red, because the global campaign is associated with the colour red, the colour of blood, as multiple myeloma is a blood disease,” said the president of the W. Adamiec Carita Foundation. “Patients, the organisation, doctors and people who knew nothing about the disease met in front of the Palace of Culture and Science to light it up together and talk about the disease — how to diagnose it, what multiple myeloma is, and how to raise awareness of the problem.”
