I was six pregnant months when my husband Ivan, who was 43 years old at the time, was diagnosed with multiple myeloma (a malignant bone marrow disease also called blood cancer) in 2020. It all started in the spring of that year, somehow after the earthquake and the coronavirus pandemic. His back started to hurt, then summer came and we were at the sea, and the pain didn’t go away. He was in pain a lot at sea, so we thought it was because he had changed his bed. We thought it was because of his work and sedentary lifestyle. But the pains were getting stronger and even the painkillers didn’t help. At that moment, you don’t think you have a deadly disease, Jelena Pravica tells us, whose husband Ivan (46) is now undergoing therapy to maintain the disease. Namely, the wordč is about an incurable disease, and the better and faster availability of smart drugs prolongs life, both for Ivan and for others suffering from this malignant disease, in which multiplied mutated plasma cells suppress other, healthy cells. Jelena’s husband Ivan had several transplants of his own stem cells, and he is currently in partial remission and receiving therapy.
– People are looking for a diagnosis for a long time because the symptoms are general. Doctors don’t immediately suspect that disease, even though we didn’t have that accident. Ivan went to a physiatrist, who examined him and told him to go for an MRI – continues Jelena. The husband went to have an MRI done at a private clinic in order to get his turn as soon as possible, because they know, he says, that there are long waiting times in hospitals. This was key to the discovery of this serious disease.
– The doctor, after reading the findings, suspected this disease based on the shape of her husband’s vertebrae. He immediately arranged for him to see a hematologist. In the ten days that passed between the physiatrist’s examination and his husband’s admission to the hospital, his condition worsened tremendously and he fell into a wheelchair. All his ribs were broken, and his vertebrae were cracked. At the same time, his kidneys were failing. Čim they admitted him to Ribro, they immediately diagnosed him that day. Now he is better, every two weeks he goes to get smart medicine, and every three months he goes for extensive blood tests. Multiple myeloma is an incurable disease, and we have a big problem with the unavailability of the best drugs for this disease in Croatia.
In order for a person to go into remission, they need the best medicine that can help them when the person gets sick, and in our country you get a better medicine when the cancer returns, but then you have the least chance. Therefore, the best medicines help best when you first get sick, because later the cancer returns more and more aggressively. We were lucky when my husband got sick that these smart drugs were approved a year ago, so it turned out well for us. But there are better drugs and the key is to approve the combination of two sets of drugs when the cancer returns – says Jelena.
An incurable disease
During the worst pain, her husband was even on morphine, which did not help relieve them.
– In the end, he couldn’t do anything because of the pain. More than 70 percent of these tumor cells were in his bone marrow, which we found out after a bone marrow puncture and a bone biopsy. It dropped 10 centimeters in just a month or two. He may not lift anything heavier than 5 kg. When he was diagnosed with the disease, he was in the hospital for six weeks. When I came home from the maternity ward, he couldn’t even hold the child. What angers me the most is that he was in the hospital for six weeks and was visited by all the doctors, but never by a psychologist or psychiatrist. The problem is that there is no systematic psychological help, and at that moment, when he found out about the incurable and fatal diagnosis, I was pregnant, and our Pavel was then four years old. A lot of people don’t even know how to tell children and psychological help. is necessary. Now there are more and more young patients. We are constantly wondering if his cancer has returned, and so every three months when he goes for check-ups. Kći Klara is now 3 years old, Pavel is 7 years old. Our life has changed, but we try to live as normally as possible, go for a walk in the forest, on trips – Jelena Pravica tells us at the end of the conversation.
Multiple myeloma is, unfortunately, still an incurable disease, but new therapies and their timely application enable patients to have a longer remission and a better quality of life. Due to genetic changes in the plasma cells, not every myeloma is the same. Namely, with maybe 20 percent of people, that remission is longer than 10 years, and with new, smart drugs, it may be even longer, says the association Mijelom CRO.
– Multiple myeloma, the second most common type of blood cancer, has been changing from a rapidly fatal disease to a chronic disease in recent years. Although it still primarily affects older patients, a worrying trend shows that multiple myeloma also occurs among younger people. The situation is becoming particularly critical in Central and Eastern Europe and the Baltic (CEB), where the incidence of multiple myeloma is increasing and the mortality rates are worsening – Mira Armour, president of the Myeloma CRO association, tells us.
While previously it mainly affected people between the ages of 70 and 75, currently, he adds, 37 percent of patients are younger than 65. An increasing number of people in the age group of 30 to 50 years suffer from this disease, which points to a worrying trend towards earlier onset of the disease.
Ninth in terms of mortality
According to HZJZ data, in 2022, Croatia was fourth in the EU-27 in terms of the incidence of multiple myeloma, and in the same year it was ninth in the EU-27 in terms of mortality from this disease. That year, 206 people died from it in Croatia.
– According to our data, at the end of 2021, there were 1,402 people living in Croatia who were diagnosed with MM at some point in their lives. According to our latest data for the period from 2016 to 2020, the five-year survival from MM in Croatia is 46%. An international Economist Impact study “Multiple myeloma in Central Europe and the Baltics” was conducted, in which Croatian doctors and patient associations participated, and which noted significant differences in the quality of health care and availability of the latest therapies in certain European countries. It is estimated that the number of new cases of this disease in Croatia will increase by 17 percent and the number of deaths from it will increase by 34 percent for the period from 2022 to 2050 – says Armour. The association requests that patients be provided with a quick path to diagnosis, that access to the best recognized therapeutic solutions be promoted for all patients, and that clinical trials be encouraged in order to help patients to have as long a survival rate as possible. as well as the best possible health care.
Prim. Dr. Sandra Bašić Kinda, the head of the department for malignant tumors of hematopoietic systems at KBC Zagreb, revealed within 24 hours that Croatia is two to three years behind Western Europe in approving therapies for multiple myeloma.
– We are at least two years late for Slovenia as well. These are proven effective therapies, but negotiations with HZZO about these therapies last two years each. The fact is that we in Croatia spend significantly less on the health system than other EU countries. HZZO claims that they need evidence about the effectiveness of the therapy, but they do not. they exist for all European countries, including Croatia. Those two years play a big role in prolonging the lives of patients. Although the disease is incurable, if the diagnosis is made in time, with the new therapies, survival is ten years, while before it was seven years. We have 260 new patients every year, and that is why it is important that new proven effective therapies are available and approved for patients in Croatia as soon as possible – he concludes.
dr. Bashić Kinda: We are two years behind Slovenia
In the availability of therapy, we are at least two years behind Slovenia. These are proven effective therapies, but negotiations with HZZO about these therapies last two years each. In Croatia, we allocate significantly less for the healthcare system than other EU countries. HZZO claims that they need evidence of effectiveness, although they exist.