When a sick person learns that he or she will not receive treatment that could save his life, he falls into despair and sometimes breaks down. But there are also those who insistently demand the right to proper treatment. Just like Jacek Gugulski - he first saved himself, now he helps others as the president of the Polish Cancer Patient Coalition, an organization that, with the support of lawyers and the media, fights for cancer patients' access to therapy under the Excluded Patient project.
To be ill in the Polish he alth care system, you must have he alth. But sometimes that is not enough. You also need to know the law, the regulations in force at the National He alth Fund, the scope of doctors' powers, and the rules for reimbursement of drugs. All this to survive. We talk to Jacek Gugulski about seriously ill people, soulless officials and unviable law.
- Your business started with a personal tragedy.
Jacek Gugulski: It really was. It all started in 1999, when I fell ill with chronic myeloid leukemia. I thought I had a few months to live. Our family was also in a difficult situation, because my wife and I had completed the construction of the house, we took a loan to finish it. Our sons were 6 and 8 years old. When I learned from the doctor that the disease would not take me away immediately, that I had not months but 4-6 years ahead of me, we decided to finish the house.
Since I am an optimist in life, I decided that it was a lot of time to fight for a longer life. I wanted to see my boys grow up.
- Fifteen years ago, there was already noticeable progress in the treatment of leukemia.
J.G .: Yes. At the beginning, I took chemotherapy in tablets. Later, interferon alpha was introduced into the treatment of chronic myeloid leukemia and was taken once a week. Such treatment gave a chance of survival for 10 years. Back then I thought it was something. The treatment was very burdensome, and I had to combine it with professional work and managing a team of a dozen or so people. Taking interferon worsened my thrombocytopenia, so I was given steroids for treatment. I didn't say I had insulin-dependent diabetes, so all my he alth parameters were very swinging, but somehow I de alt with it all.
J.G .: Yes. On the Internet I found information about a new drug for chronic myeloid leukemia. These drugs were then in clinical trials, and in Kielce, where I was treated, they were not available. Finally, after 9 months of trying, in August 2002, I got the drug. At the beginning of the therapy with the new drug, I had 36 percent in my blood. neoplastic cells, and after 5 months there were none at all. But in June 2003, I found out that the hospital was unable to continue treatment with this drug because of the high cost. I was going to go back to the interferon. I did not agree to it. I met with the provincial oncology consultant, but I heard that there would be no further treatment. I wrote to the National He alth Fund a request for reimbursement of the treatment. The answer was no. After consulting the lawyers, it turned out that I could write a second letter on the same issue. But I didn't get the written answer. I was refused orally. Finally, after 2 months of talking to the director of the hospital, I got imatinib.
J.G .: To tell the truth, I was fed up. I have found out that as a private person I mean nothing to offices. But in Poland there were already regional associations, so together we established the National Association for Aid to Patients with Chronic Myeloid Leukemia. It was 2004. It was then that we demanded talks and meetings with representatives of the Ministry of He alth. Previously, there was no such tradition, so we were treated a bit downhill. But we knew that the sick were not getting the drug because of its price increase. At the same time, I have established that in Europe it is much cheaper than in our country. We wanted all patients to be able to benefit from modern therapy, so we asked the ministry authorities to negotiate a lower price with the manufacturer. And it was possible to lower the price of the drug from 12 thousand to 9 thousand. There were also minor turbulences with finding funds for the treatment of the sick. But since 2005, all patients with chronic myeloid leukemia are guaranteed appropriate treatment. Currently, monthly treatment costs less than 9,000. PLN, and patients have three different medications at their disposal. Our success resulted in cooperation with many other patient organizations. And so, in 2009, the Polish Cancer Patient Coalition was established. Currently, 25 different organizations belong to it.
J.G .: In 2006, when the National Program for Combating Cancer Diseases was not yet in place, we tried to encourage people toresearch yourself. But this is not always enough. If we want to talk about cancer and think of it as a chronic disease, two conditions must be met. The first: the patient is concerned about his he alth and comes for a checkup, so the cancer is detected early. And the second: start treatment early. Hence our campaign "Cancer is Healed", which was very well received by the public. But this initiative also sparked a heated debate about treatment options. People said: why undergo a medical examination when you have to wait in long lines for treatment. It was the leaven to organize another campaign - Excluded Patient.
J.G .: This campaign stripped us of our illusions. It turned out that modern drugs used in targeted therapies are introduced in Poland much later than in other European countries. But this is not the biggest problem - targeted treatment affects 5 percent. all cancer patients, because not all cancers can be treated this way. Queues for regular cancer treatment are a problem. We strive to ensure that in a specific situation the patient receives the best possible treatment. Unfortunately, it doesn't work well. A person diagnosed with cancer has to wait for further diagnosis, then treatment, even surgery, radiotherapy, chemotherapy, treatment within therapeutic programs.
J.G .: There are limits and that's it. There is much talk about better access to benefits, but little is being done. After the initial diagnosis, the patient should have a designated treatment path. It should not be a problem to determine the time when tests will be performed, basic or adjuvant treatment will be started. Today, the patient circulates between institutions and there is no consistent information, no system that will collect in one place data on the course of therapy of a specific person.
J.G .: 40 patient organizations have signed an agreement on the basis of which we will want to develop a version of the National Program for Combating Cancer Diseases as seen through the eyes of a patient. It is important to us that money spent on cancer treatment is put to good use. We want every patient to be properly managed. That he has a path at the beginning of treatment that will lead him to recovery. The oncologist should provide the patient with a "schedule", where and at what date to report in order to start or continue treatment.
J.G .: It's true, we are not a rich country, but even taking into account our GDP, there should be twice as much money. But as a Coalition, we do not demand an immediate increase in funding for oncology treatment, because we are all too well aware of the reality. Let's start by sorting out your current expenses. One of our proposals is to transfer the treatment of some patients from hospitals to the outpatient clinic. From a medical point of view, it is absolutely possible.
J.G .: It is important for the patient that the employed doctors have appropriate qualifications and that they have equipment that facilitates diagnosis and treatment monitoring. Unfortunately, private facilities only start treatment if the procedure is well priced. They do not start treatment if more than the National He alth Fund pays. Patients then go to state hospitals, where they have to wait in long lines. So we cannot boast of good survival statistics. Of course, all the problems of people with cancer cannot be solved quickly, but we do our best.
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