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The diagnosis is like that of a movie.
The guy who did a lot of sports rarely got sick, and the sudden symptoms: cold sweats while exercising, night sweats, nausea and others didn’t even make him think of more serious health problems, it seemed like a cold. Also, 2006 was almost the first year that there was a lot of talk about rotavirus in Lithuania, so he wrote down all its symptoms.
With no improvement in health for three weeks, the boy consulted a family doctor. A blood test was done and an hour later she was greeted by a nurse who worked with a family doctor and was told to repeat the test because something was wrong. After a while, the chief of the polyclinic came to the house: he wanted to see the patient whose blood tests were, and he could not believe that it was Š.Narbutas. He ordered an urgent preparation for the hospital and did not explain anything else.
At the Šiauliai Republican Hospital, the young man underwent additional tests on suspicion of leukemia over the weekend and was sent to the Santara Clinics of Vilnius University. There, specialists confirmed the diagnosis of leukemia after three days.
“The doctors did not tell me about leukemia, my mother and sister said. I remember very well that it happened on November 7 because it was my sister’s 30th birthday,” says Šarūnas. “I was lying in the living room, waiting for some answers, my mother and sister came, we went to the hall to talk. They started from afar: they said something is wrong, there has been a lot of research, they may be waiting for a long treatment … Finally He said, “You have blood cancer.” And they both started crying. It seemed like I was watching a movie with a diagnosis that made it clear to everyone that it was just death, but I started assuring my mother and sister that everything would be Well, we still don’t know exactly, we don’t know what treatments are possible … “
When he returned to the living room, Š.Narbutas felt like a bubble, because there was only uncertainty around him. I didn’t think you needed to go to sleep, and the doctors would come tomorrow to tell you the final results. Later she began to consider what that diagnosis fundamentally changes in her life. After all, if they are alive and healthy, they will be able to finish school. If you graduate and still have health, you will enter the university. If you graduate from college, you will be able to work. Therefore, not much in life is changing. It is just a challenge to accept and live.
13 years of treatment
Doctors who arrived the next day gave the diagnosis (chronic myelogenous leukemia) and two possible treatments: chemotherapy or a bone marrow transplant. Narbutas’ sister had already read a lot about her brother’s illness during the night, so she asked why the doctors were not talking about targeted therapy medications. The doctors replied that it would be possible to talk about it if Lithuania were not a “banana republic”.
“I started preparing for a transplant. I checked with my family to see if anyone could be a bone marrow donor. No one agreed.” I arrived at the hospital on Christmas Eve with the so-called stabilized blood formula and waiting for a bone marrow transplant, but the doctors told me there would be no transplant, “I am prescribed targeted therapy medications,” recalls the man.
Even later, Š.Narbutas learned that at the time he needed treatment, the state reimbursed the drugs to about twenty patients, and there were around 200 of them who needed them, so doctors had to choose who prescribe and who does not. The man thinks that the medicine was given to him because of his young age and because the disease was diagnosed at an early stage.
“Targeted therapy is a much easier treatment than a bone marrow transplant. The medication gave me the correct answer, there were not as many side effects. And I have been taking these medications every day for 13 years. So far I have not achieved a complete remission, “says the man.
If you manage to achieve remission, you could try to stop the medicine after two years. About half of the patients remain in remission after stopping the drug, but half of the disease begins to progress and should be controlled again with the same drug.
I decided to take care of others
Š.Narbutas divided his additional life into stages into stages and traveled successfully (even more successfully than doctors expected) from one stage to another. After learning the diagnosis in 2006. In October of that year, at Christmas, he had already started treatment with targeted therapy medications, and in the spring of 2007, he returned to school and took his high school exams.
After graduating from school, he immediately entered the Vilna University Law Faculty and acquired the specialty of a lawyer. He has already worked at one of the largest law firms, and later as legal adviser to President Dalia Grybauskaitė. Now he teaches health law to students of the Vilna University Law Faculty.
After the disease receded, the boy decided that another 200 people with the disease should have a chance to live. In 2007, up to 180 thousand people signed the petition initiated by Š.Narbutas. town, its history reached the Seimas and the Government. 2008 Many more patients received chronic medications in 2010, and in 2010, all those with chronic myelogenous leukemia for whom such treatment is appropriate.
POLA’s activities are developing and growing very strongly, so help is increasingly available for patients with cancer diseases.
“Now this disease is not a death sentence, it is possible to live with it with medications,” says S. Narbutas.
According to him, chronic myelogenous leukemia is a rare disease: it affects one in 100,000 people. people, but it’s one of the best studied since the era of targeted therapy in oncology began, and now there are about 50 different places for cancer that can be treated with targeted therapy medications. Over the past decade, progress in oncology has been tremendous, unparalleled in any other disease group and never before.
The voice of the community
After learning that various events related to the treatment of myelogenous leukemia are occurring in international organizations, Š.Narbutas went to see one of them. There, he realized that it was possible for many people to take serious action: There is a community that asks questions on a global scale, patients have no less voice than doctors, they are consulted and their opinions are taken into account.
Therefore, the man joined the European Oncology Patient Coalition, of which the national oncology patient organization is a member, and was elected to the board of that organization. He currently heads the world organization for chronic myelogenous leukemia.
“While participating in international events, I saw a great contrast between what we have in Lithuania and what is in Europe,” says the man. “At that time, patient organizations in Lithuania were one person, because the same person was mentioned and talked about everywhere. Also, it seemed that At European level, I have seen that patient organizations are equal partners with the same European Commission or the European Parliament, they are debating, decisions are taken together, they are not, and they are not very self-sufficient. I see that there is a different operating model, some transparency practices: organizations have to make their finances public, give account for their activities, have a board rather than a single person, define processes as consultation with their members. All these things have been incomprehensible in Lithuania for a long time. “
The largest patient organization.
After completing his term on the Board of the European Coalition of Oncology Patients, Š.Narbutas decided it was also time to have a strong umbrella patient organization in Lithuania, and create it by adopting the European model of good governance. This is how POLA emerged, and Šarūnas has been its leader for eight years. During that time, POLA has become the largest patient organization. Their community is growing between 400 and 500 patients each month.
According to S. Narbutas, the organization’s goal is to help people who have learned that they have an oncological disease. Patients feel the benefits primarily through the POLA card. Those who receive it receive discounts on health-related goods and services: more than 100 companies offer discounts. Cardholders also receive invitations to cultural events: 13.5 thousand were distributed last year. invitations to theaters, museums. Patients receive free legal, psychological, nutritionist consultations, as well as transportation benefits, as most patients have to travel frequently to major treatment centers, which is expensive.
“It is also gratifying that POLA members meet in self-help groups, they are assisted by doctors, counselors and volunteers, which we have in approximately 80 different cities. They help organize various activities. POLA activities are developing and growing very strongly, making aid increasingly accessible to patients with cancer diseases, “says Š.Narbutas.
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