From September 15 – 18, 2007, the Croatian Leukaemia and Lymphoma Association brought patients together in Dubrovnik for the “Leukaemia and Lymphoma” Congress.
During the congress, we heard a number of presentations about the disease and help provided to the leukaemia and lymphoma patients. Lana Šarić presented the work of the Ana Rukavina Foundation.
Besides that fact that the number of donors in the Registry has increased by about 13,000, the Foundation has succeeded with another important issue: the cord blood bank has been opened, as a place where every child will be able to have his or her own stem cells stored. Collecting a newborn’s stem cells will soon be possible, not only in Zagreb, but in other Croatian cities as well.
The Ana Rukavina Foundation has truly become an institution. The people who started it continue to be involved in its operations. It has become a full time job, and fortunately, there is enough support to keep it going.
However, the story isn’t over yet, at least not for me. We have our Foundation, the bone marrow donor Registry and the cord blood bank, but that is still not enough for the patients. There is still a lot of work to be done which the Foundation alone cannot be expected to cope with. It is the responsibility of the competent Ministry and our government.
When a person is diagnosed with a disease, their whole world falls apart over night. What used to be a normal life changes to a mere existence, a constant fight, isolation, and torture that goes on for months. These people deserve the best clinical conditions possible. They deserve all the drugs free of charge and all the tests immediately – in Croatia, at no charge. I must say that the hospitals are not to blame. We all know how old and poor the hospitals in Zagreb are, but take my word for it, it is hard getting used to living like a dog, after having lived as a human being. For many of my friends at the hospital this was the most depressing and demotivating factor, and one of the reasons they didn’t make it. Most people still think that it is not possible to survive a malignant disease, so the prevalent feeling is – why bother. We have to change that perception. Each and every person who has to fight such a disease deserves conditions fit for a human being. Unfortunately, that is not always the case. Most of us at the hospital were young people and, besides the illness, our problems were in fact trivial: there were not enough mobile infusion stands so we could not move about; the hospital food was inedible; the beds were uncomfortable. During my first therapy session I was put in a room the size of a broom cupboard. For 40 long days and nights, that was my whole world. In addition to that, the sanitary conditions were poor, there was no air conditioning, and the hospital was short of beds.
And that’s not all. Why do patients with lymphoma have to go abroad to have the PET test run? And why do they have to bear the 1,000 Euro cost for that on their own? What if a family simply doesn’t have the money? What then? Should they go to the newspapers? Make their ordeal public? Live through another humiliation and bitter experience? How must a young child feel when he or she is forced to pose for Jutarnji List and beg for their life? Is this really the only way?
Every day people throw money away buying trivial things, things they don’t really need. We are young people. We will work, we will pay taxes, we will live, and we will be useful, but only if you let us, only if you help us give it our best shot. One of the things we all agreed on in Dubrovnik was that the PET test equipment must be purchased urgently so that the necessary tests can be run in our own country, in Zagreb, at the expense of the HZZO, the Croatian National Health Department.
I am not against a thorough feasibility study. Even rough estimates show that there are many potential beneficiaries. But if not, even if only one life were at stake, can we really put a price on human life?
I find that unacceptable. The fact that some drugs are not free of charge when the disease recurs is intolerable. A recurrence is simply not a diagnosis that falls under the free treatment category. What kind of bureaucratic nonsense is that? If you become ill, we will pay for your treatment, but if you fall ill a second time and God forbid maybe even a third, you are on your own? These things happen even now, when many drugs are listed as free of charge, and they fill me with anger and make me feel helpless. A hundred thousand Kuna is not much for a large system. But to the average Croatian family this is a sum they can only dream of.
The fact that the haematological department functions at all is a real miracle for which we have only the doctors and nurses to thank. Almost everyone who’s ever been there has had the urge to give something back, to do something after finally saying goodbye.
There will always be sick people. And it is not enough to give them life. You must give them the best opportunities to flourish and use that gift of life and that is just as important. Actually, it is what makes the difference between “surviving” or “succumbing”.
I don’t want things to happen ten years from now. I want them to happen as soon as possible. I don’t know if I’ll ever have to go back there. I’m sorry for those people who will. Sometimes I want to grab a camera and confront people with the reality, share with them that claustrophobic feeling and give them a taste of the horror that every patient who wants to get healthy must go through.
Chances are that every Croatian citizen has or will have to spend at least one night of their life in a hospital so that is something that affects us all Nickels and dimes donated now and then is not the solution, although they mean everything right now. The solution is a global improvement in hospital conditions. What I am going to say now may sound harsh but I will say it anyway: every time someone decides to make a donation, they usually give it to homeless children or a paediatric ward. Well, there are many children in the haematology ward too; it almost broke my heart just looking at those brave little fighters.
The Foundation cannot and should not deal with the purely technical aspects, although its work will have a bearing on those as well. Does this sound like an appeal? It should because this IS my appeal for action to anyone who can do something.
We should not be expected to rely on the newspapers every time something happens in Croatia or somebody needs help, whether the person is Ana Rukavina, the poor and deprived, sick children, children who need cochlear implants, firemen… Newspapers should get involved too, sometimes it is even essential, and so far, each time that something has been achieved thanks to our valiant journalists. But that’s not how it should be. It just does not sound right that even the most burning issues should be resolved by citizens’ donations of ten Kuna or so. The fact that so many social problems in the past have been solved with the help of good people only proves that we are not a country of selfish people and I am sure that we are all grateful for that. People have become more sensitized to problems and thus more effective when it comes to taking public action. But it’s a far cry from the structured system we need.
A couple of months ago I said I hoped that nobody would ever have to write letters like Ana’s again. Her letter shocked all of Croatia, it did. But, I still stand by my words.
The above text is a short summary of what I said in Dubrovnik with some minor changes added in the course of adapting it for this purpose. I spoke more as a patient and a private person, and less as a Foundation member because I thought that my personal views would convey the message much better. And last but not least, I have only Ana to thank if anyone reads this.