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I returned from Paris. In the two days I had spent searching for a second opinion, I had accepted the fact that my therapy was going to start from the beginning again, after surgery for a local recidivism. I arranged a meeting with my doctor at the Rebro Hospital. In the meantime, I got a court interpreter to translate and notarize the opinion of the French doctor, who, unfortunately or fortunately, did not agree with the opinions from Croatia. Encouraged by this “evidence,” I walked proudly into my doctor’s office, impatiently wanting to tell her all the details of my foreign consultation, actually addressed to her in writing. She listened to me, without showing much interest, while the expression on her face did not bode well.
“I have nothing against Prof. Jasmin’s opinion. I will write you a private prescription and you can go to the pharmacy and buy Taxotera for your first round of chemotherapy. Taxotera is not on the HZZO list for local recidivism.”
“Sorry, but I don’t understand?! Don’t I have the right to that drug on the basis of the second opinion from abroad, but also because of your opinion, which I expect you will write to the hospital’s Medications Committee?”
“I will not prescribe you anything; we don’t have the money even for women with metastatic carcinomas, so how can we approve adjuvant therapy for local recidivisms?”
“If I understand you correctly, you actually don’t agree with your French colleague? If it were your life in question here, would you agree then?” This question fell between us like an atom bomb.
“What is it with you patients?! Everyone is asking me the same thing! I can’t have breast cancer one day, stomach cancer the next, and the following day colon cancer … I told you that in this phase of your illness you do not have the right to these drugs, but you have to go to the pharmacy and buy them yourself.”
“But, wait a minute, I am not asking you if the hospital, the government, or whoever, has the money to pay for it. I am asking you for your opinion as an oncologist, if (as Prof. Jasmin has put it) this young woman, from a medical point of view, should receive this therapy or not…? Please write your expert opinion as an oncologist!!!” I am not giving up …
“Treatment for one round of this cytostatic drug costs 9500 kunas, which is one and half monthly salaries for me as a senior assistant at my Faculty.” I ended the conversation. Angry and in tears, I walked out of the office of a doctor who had long since forgotten about Hippocrates, and her oath, and who had become in fact nothing more than a pen-pusher for the Croatian Institute of Health Insurance.
Over the next few days, I went round all relevant administrative offices in the country, trying to obtain the necessary therapy through my health insurance, which I had been paying all of my working life.
I also contacted the chairman of the committee at Rebro Hospital for the approval of therapy on the recommendation of a competent oncologist, to ask him what the Committee did in cases when the law defines the rules for metastatic carcinomas but not for local recidivism, which may or may not be a metastatic carcinoma.
“I think you should be given this therapy,” the Committee chairman told me, “but we have to have a written request from your doctor.” I knew that I would not get anything in writing, whether an opinion or a proposal from my doctor, after the way we parted last time. I had no confidence in her anyway, I think that the daily routine of many years’ work had destroyed any empathy she had had for her patients. But I still had a great need to dot the i’s and cross the t’s in our relationship. I bought a book called “A Season in Hell: A Memoir” by Marilyn French who, despite poor chances for her esophageal cancer, survived the illness and the fight with bureaucracy during her treatment. With the book, flowers, and an honest, but sharp letter, I sent my “opinion” through a florist to my oncologist, turned from a doctor into a government pen-pusher and a mere cashier for the state health insurance, explaining that I no longer wanted to be her patient. Who in their right mind would want to be the patient of a doctor like that, who does not even want to write their own expert opinion as an oncologist, talking about the lack of money for women with metastatic carcinomas? I am sure she would never say anything like that in the public. Now, after so many years of my diseases, I know that she is not an isolated case of irresponsibility, lack of empathy, insufficient care in carrying out check-ups, and what is most important, denying to the patients the information about the best treatment, regardless of who will bear the costs.
I wonder when the doctors in this country will begin to lose their licenses due to their unconscientious behavior? There is only a “small” difference between the “Index” affair, in which teachers at my Faculty of Economics were arrested and sentenced for academic corruption, and the unconscientious behavior of doctors in the health service. The convicted lecturers lost their honor, reputation, and working rights, and they brought disrepute to the dignity of their academic vocation, while the price of doctors’ failures cannot be evaluated – because it is measured in human lives. I am always especially fascinated by the rivalry between doctors on the same ward, but when their rights are threatened, or when a patient by chance complains about someone – then they become brothers in arms and a united front. That is why even now in 2010 you will not hear a united professional voice from doctors and oncology associations about major problems in the access to many forms of treatment, especially expensive drugs for malignant diseases. This is where patients’ groups come onto the stage like a kind of pioneer movement.
Our association “All for Her!” also joined the federation of oncological patients’ associations, “Together Against Cancer.” Our aim is to be united in the fight for the basic rights of all oncology patients. Even the Constitution of the Republic of Croatia states that all citizens are guaranteed health care as defined by laws. And laws say that this is true even for the drugs registered in the country but subsidized by the state insurance, when they are prescribed by the competent oncologist and approved by the hospital medications committee. There the games without frontiers begin, with Machiavellian politics between the Ministry of Health, Health Insurance Institute, hospital committees, competent oncologists, and, at the very end – the patient. Yes, by law and formally you have the right to treatment, but in practice it doesn’t work out, because the patient who tries to fight for more than is offered by a competent oncologist in that forest of administrative regulations, loses precious time or, tired from the illness itself, simply gives up.
That was the story how my communication with my doctor-pen-pusher ended. The head of the same department, took me on as a patient and we are still together to this day. Around that time Tanja, my colleague of many years, contacted me. I had worked with her for several years in the former Croatian pharmaceutical company Pliva. She offered to find a donation for me for the first two rounds of chemotherapy. This was a big help for me at that time, and it is not a small thing even today, when you have two average Croatian salaries to sustain your household. In September 2004, with Tanja’s help and later at my own expense, I started my second line of chemotherapy with Taxotera. Throughout the chemotherapy, I continued teaching at the faculty. It was sometimes as hot as hell under the synthetic hair of my wig, but there was no way I was going on sick leave, even when my blood count showed dramatic neutropenia. My Dr Rada, a family friend, couldn’t believe it because it was the peak flu season of the winter, with lecture theaters full of students who themselves sometimes came full of viruses, coughing, sneezing, and whatever. But these students were my strength, my comfort, my hope that I would always be with them… they knew I was undergoing treatment and they always gave support in their own quiet way. My only frustration was that, when they crowded around me during the break to sign their papers, I was afraid that my wig would get shoved to one side by someone’s elbow. But then, I would think how funny that would be and all the fear would disappear, because that is life… with all its little, unpredictable banalities that do have a certain charm… Week after week, from Monday to Friday. I even managed to resolve my neutropenia with homemade bacon and a bit of blackberry wine. A well-tried and infallible over-the-counter recipe.
Just before Christmas 2004, Prof. Žager, the vice-dean for academic affairs, called me to her office. I went, a bit nervous, re-examining my work and the possibility that I had made some kind of mistake because of my illness.
“Wow, your hair looks really nice – it’s a lovely color and cut!” the vice-dean began the conversation.
“I’m sorry Katarina,” I used her first name, surprised, “That is not my hair, it’s a wig!” Although people knew I was undergoing treatment, they sometimes forgot the fact that you lose your hair during chemotherapy. She was embarrassed and blushed, but I was really anxious about what was to come. Why had she called me for an interview?
“You know, when we heard you were paying for your therapy yourself, we decided to donate 50,000 kunas, because the Faculty has this money available just now.” My Tanja helped with two rounds, and now my Faculty, whom I had not asked for anything, was going to donate of the rest! They say that when God shuts a door, He always opens a window, and it seemed to me than that He had opened the door and all the windows for me. The recognition of love in one’s colleagues can move you just as much as sorrow, so the conversation ended in silence, both of us in tears.
The second line of chemotherapy ended in January 2005, after which I decided to go to see Prof. Baselga in Spain and consult with him about continuing immunotherapy, in view of my HER2-positive tumor. On February 22, 2005, I arrived for my first consultation. The Spanish television company was in his office that day, making a documentary about breast cancer treatments and Prof. Baselga’s projects, so he asked me if I would object to them filming my consultation. Of course, I did not.
After he had carefully studied my medical documentation, he said briefly, “You know that the tumor is back and that is a message we need to take seriously. Although it is a local recidivism, it needs to be classified and treated as a metastatic tumor. You need to go on adjuvant therapy with Herceptin for a year.”
“I expected that you would make that recommendation, but Croatian health insurance does not cover Herceptin, just as in many other countries, and a year’s treatment costs a little less than € 30,000.”
“Yes, unfortunately I know that, but if you can’t get it in your own country, come to Barcelona, you can get it here as part of a clinical study. I even have women coming from Texas in the United States. They have very cheap plane tickets these days…”
On 7 April 2005, after a great deal of correspondence with the Ministry of Health, as well as the support and written statements of my oncologist, I made use of a “loophole” in the legal regulations to get my first Herceptin treatment. I think I was the first woman in Croatia to have Herceptin approved at that stage of the illness. I succeeded by my own efforts and the support of my doctor, Prof. Vrbanac, Chair of the Oncology Department at Rebro Hospital, who had not forgotten the day he took the Hippocratic oath and who was prepared to write his professional opinion to the hospital medications committee, not thinking about the Croatian gross national income, the hospital budget, or spending by the state and hospital on expensive drugs, but about the importance of this treatment for me as a patient. Croatian doctors are not ignorant, Croatian doctors travel to all world research conferences, and are up to date with all the innovations. Unfortunately, as far as oncology is concerned, I can say, without any embarrassment and as a long-term patient, that many of those with whom I have had contact, are completely uninterested, especially in those of us who have been receiving treatment for many years and fighting for months and years of life, for every day, day after day.
While I am writing this on a hot and humid afternoon, for a moment I look through the window of my rented Munich flat at the roofs of the houses around me. For the last two weeks, a multi-disciplinary team of doctors – a pulmologist, an oncologist, and a radiotherapist from the Rechts der Isaar Clinic have being struggling with my pleural effusion before they started the tomotherapy of the left pleura. This is not the standard treatment algorithm anywhere, even in Germany, but at this point it was the only possible treatment for me, and I know it will work. I think that this therapy is along the lines of what is expected in the future from personalized therapy.
At the same Clinic and time, the same team of doctors came to an agreement about what to do with my friend Andreja, who is 36 and has also been fighting breast cancer for eight years. She has estrogen and progesterone receptors negative and HER2 negative breast cancer, and has spent two days in the past week in the hallways of Jordanovac Hospital for Lung Diseases in Zagreb, begging doctors to aspirate the fluid from both of her pleural cavities because she was literally suffocating. After she barely managed to get the needed relief, “All for Her!” arranged for a consultancy here in Germany, so that the same team of doctors now looks for the best solution for her case too. I am very sad for my country because I have to say that here she is not just a CASE, she is Andreja, a young woman, the mother of two boys aged 8 and 9, whose photo on the screen of her cell phone she shows to everyone.
Ladies and Gentlemen, if you are perhaps among those who have forgotten the time when you took the Hippocratic Oath, close your eyes, go back into the past, to the moment you received your degree and when you took the oath, “I swear by Apollo the Physician and Asclepius and Hygieia and Panaceia and all the gods, and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant…Whatever houses I may visit, I will come for the benefit of the sick…”