The decision of the health ministry to halve spending on the treatment of hemophilia in 2014 is a threat to the health and life of patients, hematologists and patients are alarming. The Ministry of Health confirms the cuts, but stipulates that the financial plan may be changed according to the observed needs
When asked by PAP, the spokesman for the Ministry of Health, Krzysztof Bąk, confirmed that PLN 2014 million was allocated to the National Program for the Treatment of Patients with Hemophilia and Related Hemorrhagic Disorders for 125. This is half as much as stated in the program – adopted in 2011 – in which the amount of nearly 2014 million was planned for 250.
There is no doubt that 125 million will last for only six months and will not provide an adequate level of treatment for patients with hemophilia and related bleeding disorders. Such a reduction in the budget absolutely threatens the health and life of patients – said Prof. Krystyna Zawilska, chairman of the Hemostasis Group of the Polish Society of Hematologists and Transfusion Medicine.
In her opinion, it will be a huge step backwards. Compared to the current situation of people with hemophilia in Europe, we would move back to the Third World. It is unacceptable – she emphasized.
Hemophilia and its related bleeding disorders are the most common genetic disorders of blood coagulation. The number of patients suffering from these rare diseases in Poland is estimated at over 4,5 thousand. people, of which about half are hemophiliacs. These diseases appear as spontaneous painful bleeding under the skin, as well as into joints, muscles and internal organs. Repeated hemorrhages can cause permanent organ damage, such as joint degeneration and disability. They can also be life-threatening. People who suffer from them are exposed to long-term bleeding as a result of injury, trauma, surgery or dental surgery.
These conditions are incurable for the time being, but – as stated in the National Program for the Treatment of Patients with Hemophilia and Related Hemorrhagic Disorders – proper treatment reduces the percentage of patients who cannot work due to disability and retire, and also reduces the number of hospitalizations, costly procedures and surgeries. and deaths. Therapy consists in giving the patient the appropriate clotting factor.
According to prof. Zawilska, with the expenditure on the program reduced by half, there would be approximately two units of coagulation factor VIII per capita in Poland (the number of factor VIII units per one statistical inhabitant is the accepted measure of the standard of treatment of patients with hemophilia in a given country). “We had such an indicator many years ago. Currently, it is typical for underdeveloped countries and does not ensure the safety of patients ”- she explained. She added that with outlays exceeding PLN 200 million, the factor VIII supply ratio is quite good and last year it amounted to 4,76 units per capita in Poland.
In response to a question asked by PAP whether the reduction of expenditure on the hemophilia treatment program would not threaten the health and life of patients, the spokesman of the Ministry of Health informed that the financial plan, including funds for the purchase of clotting factor concentrates, “may be changed according to the observed needs.”
However, experts and patients agree that this will jeopardize the continued treatment of patients with haemophilia. President of the Polish Association of Patients with Hemophilia, Bogdan Gajewski, recalled in an interview with PAP that the purchase of clotting factors takes place through a tender, which must be scheduled in advance. This will cause drug delivery delays.
Continuity in treatment is essential in hemophilia. Without ensuring continuity of therapy, it can be predicted that the patient will die within a few months. Therefore, the decision of the health ministry to reduce the expenditure on the program is of great concern to patients and us doctors, told PAP Dr. Joanna Zdziarska from the Department of Hematology at the University Hospital in Krakow.
She recalled that 5-6 years ago there were breaks in the supply of clotting factors. Then terrible things happened. We had to cancel patient surgeries, choose who to give the factor. This cannot be the case in the XNUMXst century – assessed the hematologist.
She explained that clotting factors must be accumulated in a specific amount when a patient is scheduled to operate, when he undergoes rehabilitation. But we also have unplanned situations, such as a sudden need to excise the appendix or gallbladder, and then the factor is also needed suddenly – explained Dr. Zdziarska.
She stressed that canceling scheduled surgeries due to a lack of clotting factors is a waste of – and so very limited – healthcare resources. Before such an operation, we reserve the time of many doctors, a room, and provide blood for these procedures. Besides, if we suddenly run out of medicine for the patient, we can doom him to a disability. It is illogical, since we previously invested a lot of money in the prevention of strokes and in the treatment of such a patient – noted the hematologist.
Gajewski, in turn, pointed out that if there are no clotting factors and there is a sudden need to buy them, producers will take advantage of this situation and push up prices. We have already had such experiences. Then, for the same money, you will be able to buy a much smaller amount of the drug. It is very uneconomical, he explained.
Experts agreed that the best solution would be to maintain funding for the National Program for the Treatment of Patients with Hemophilia and Related Hemorrhagic Diseases according to the current rules and levels. Only in this way will we be able to meet the needs of the sick and not risk their life and health, summed up Gajewski.
Joanna Morga (PAP)