6600 PLN* = 1650 EUR is the monthly cost of the therapy which saves my life
0 PLN - that is the contribition from my health care insurer = the Polish National Health Fund
* before 01.01.2012 it was 6400PLN
How has it started?
In 2004 I've been diagnosed with Multiple Sclerosis (MS) after my right leg had become numb and weak. I was an 18 year old girl then, very keen on sports. Without any doubts the diagnosis was a huge shock for me and my family; nevertheless I tried to treat it as another challenge in my life hoping that I would deal with it. I convinced myself that with strong will and optimism one was able to cope with any problem. After the diagnosis I managed to spend some time abroad on a scholarship, graduated from University, started working and even practiced my favourite sport which was long distance running.
Why am I asking for help?
Unfortunately everything has changed in 2009 when my remitting-relapsing MS suddenly turned into a very active relapsing-progressive form. The basic therapy financed by Polish National Fund did not bring positive effects in my case. My only hope became the drug named Tysabri (natalizumab) which was suggested by my doctors a.s.a.p. due to the fast progression of my disability.
Tysabri is commonly used in all European countries and all over the world since 2006. In all the EU countries this therapy is funded or co-funded by the national health funds. Poland is the exception. Here, a patient is left to his own devices and has to pay the full price of the drug - 6400 pln (ca. 1550 euro) each month, out of his own pocket. The therapy should be continued for at least 24 months.
We were waiting with the decision to begin this therapy for a long time because the cost was much above our financial ability. I still had hope that the progress of my MS would suddenly stop. But month after month it was only worse and worse...
The begining of the therapy was kind of desperate act because I had no quarantee that I will have funds to continue the treatment. With the financial support from my extended family I was able to receive four Tysabri doses till now.
What next?
Tysabri treatment occured to be very effective in my case. In the short period of time Tysabri significantly decreased my disability. Currently I am using a crutch, but at home or on a small distance I do not even need it. Despite such positive response to the treatment, the Polish National Health Fund still refuses to pay for my therapy. They are hiding behing the Agency for Health Technology Assessment in Poland (an advisory body to the Ministry of Health) stating that the Agency did not publish positive opinions about the drug so far. What is interesting, the application to place Tysabri treatment among other therapeutic drug programms was submitted on 01.04.2011 and until today it is unknown when the decision will be made. As a result, each month I am terrified about the money for next dose. How long will I be able to continue the treatment?
How does a patient feel in such a situation?
It is hard to put it into words how helpless and frightened I feel while dealing with my health insurer. In Poland we still have the state monopoly in the health care area so there is not much I can change or do about this. I have totally no support from the state health insurer. Beside the fear concerning my health I have plenty of nervous situations with dealing with administration personnel and not much hope that the drug will be available soon through the Polish National Health Fund.
You can help me
So far, I have taken 5 Tysabri doses (25.09.2011). Assuming that my teraphy will last the minimum 24 months, there are 19 doses ahead which will cost ca. 30000 EUR. I experienced plenty of support and kindness, sometimes from complete strangers. I guess that thanks to this I am not afraid to ask for help in raising money for my treatment today. Each Tysabri dose is a step forward and towards getting my health. Each donation is more hope for a normal life. Thank you so much for paying attention to my story. Thank you for your support and help.
You cannot imagine how much it means to me.
Kamila
The movie was recorded one day before I started the Tysabri therapy. The spastic paresis of both legs was the main problem to deal with. Each step was painful and required so much effort.
0 PLN - that is the contribition from my health care insurer = the Polish National Health Fund
* before 01.01.2012 it was 6400PLN
How has it started?
In 2004 I've been diagnosed with Multiple Sclerosis (MS) after my right leg had become numb and weak. I was an 18 year old girl then, very keen on sports. Without any doubts the diagnosis was a huge shock for me and my family; nevertheless I tried to treat it as another challenge in my life hoping that I would deal with it. I convinced myself that with strong will and optimism one was able to cope with any problem. After the diagnosis I managed to spend some time abroad on a scholarship, graduated from University, started working and even practiced my favourite sport which was long distance running.
Why am I asking for help?
Unfortunately everything has changed in 2009 when my remitting-relapsing MS suddenly turned into a very active relapsing-progressive form. The basic therapy financed by Polish National Fund did not bring positive effects in my case. My only hope became the drug named Tysabri (natalizumab) which was suggested by my doctors a.s.a.p. due to the fast progression of my disability.
Tysabri is commonly used in all European countries and all over the world since 2006. In all the EU countries this therapy is funded or co-funded by the national health funds. Poland is the exception. Here, a patient is left to his own devices and has to pay the full price of the drug - 6400 pln (ca. 1550 euro) each month, out of his own pocket. The therapy should be continued for at least 24 months.
We were waiting with the decision to begin this therapy for a long time because the cost was much above our financial ability. I still had hope that the progress of my MS would suddenly stop. But month after month it was only worse and worse...
The begining of the therapy was kind of desperate act because I had no quarantee that I will have funds to continue the treatment. With the financial support from my extended family I was able to receive four Tysabri doses till now.
What next?
Tysabri treatment occured to be very effective in my case. In the short period of time Tysabri significantly decreased my disability. Currently I am using a crutch, but at home or on a small distance I do not even need it. Despite such positive response to the treatment, the Polish National Health Fund still refuses to pay for my therapy. They are hiding behing the Agency for Health Technology Assessment in Poland (an advisory body to the Ministry of Health) stating that the Agency did not publish positive opinions about the drug so far. What is interesting, the application to place Tysabri treatment among other therapeutic drug programms was submitted on 01.04.2011 and until today it is unknown when the decision will be made. As a result, each month I am terrified about the money for next dose. How long will I be able to continue the treatment?
How does a patient feel in such a situation?
It is hard to put it into words how helpless and frightened I feel while dealing with my health insurer. In Poland we still have the state monopoly in the health care area so there is not much I can change or do about this. I have totally no support from the state health insurer. Beside the fear concerning my health I have plenty of nervous situations with dealing with administration personnel and not much hope that the drug will be available soon through the Polish National Health Fund.
You can help me
So far, I have taken 5 Tysabri doses (25.09.2011). Assuming that my teraphy will last the minimum 24 months, there are 19 doses ahead which will cost ca. 30000 EUR. I experienced plenty of support and kindness, sometimes from complete strangers. I guess that thanks to this I am not afraid to ask for help in raising money for my treatment today. Each Tysabri dose is a step forward and towards getting my health. Each donation is more hope for a normal life. Thank you so much for paying attention to my story. Thank you for your support and help.
You cannot imagine how much it means to me.
Kamila
The movie was recorded one day before I started the Tysabri therapy. The spastic paresis of both legs was the main problem to deal with. Each step was painful and required so much effort.
This small bottle costs 6400-6800 pln and has to be administered each month.
Just after two Tysabri doses I was able to walk without crutches covering short distances.
While walking on a flat ground my problem with legs is almost invisibile. However, I am still getting tired quickly. After ca. 0.5 km balance gets worst and left leg doesn't work properly. Anyway, every month I feel stronger. I haven't used my crutch since November!