- February 7, 2013
Radczenko: Darek Majewski – This is a Constitutional Problem
Four-year-old Darek Majewski suffers from an incurable disease. There is a medicine which alleviates the symptoms of the disease; yet, it is not reimbursed by the Lithuanian state. In spite of appearances, it is not only a financial, medical or emotional problem. It is a constitutional problem as well.
A disease which little Darek suffers from—mucopolysaccharidosis Type II (Hunter syndrome)—is incurable. It is only possible to alleviate the symptoms of the disease and thus the National Health Care Fund does not reimburse the “Elaprase” medicine. A price of this medicine for a child who weighs 20 kg is 1.5m Lt per year. The expenses raise with age.
It is not the first case when the country refuses to provide a treatment for incurable diseases.
A few years ago Tomek Sadowski from Landwarów, suffering from mucopolysaccharidosis Type VI, was a high-profile issue. At the time the National Health Care Fund also refused to reimburse a medicine which only alleviates the symptoms of the disease. “We regret to inform you that the budget of Obligatory Health Insurance Fund for the treatment of rare diseases is limited. As for 2012 we allocated 10m litai which is sufficient for the treatment of 500 patients”—explained then the Health Care Fund. The institution elucidated that with such limited budget it “aims at reasonable expenditure of means by ensuring permanent treatment for people affected by rare diseases.” These arguments—provided that the situation is assessed from the financial point of view—might be legitimate. There are a few dozen of cases in Lithuania similar to those of Darek Majewski and Tomek Sadowski; treatment expenses for one patient amount to one million or several million litai per year and the patient should receive a lifelong treatment.
However, shall we consider such cases only through the financial matters? Apart from moral or even legal issues, justification of such a selective choice when refunding medicines seems to be inconsistent with the Constitution.
“The state cares about the human health and assures help and medical service in case of disease”—stipulates article 53 of Lithuanian Constitution. This rule is implemented in Lithuania by a national health insurance system. Almost every citizen who earns a living is charged with the obligatory insurance premium constituting (usually) 6 percent of personal income (additional 3 percent is paid for us by the employer), which is transferred to the Obligatory Health Insurance Fund.
This system is based on the solidarity principle. Each of us pay fixed amount into the Fund expecting that the Fund will cover the costs of our treatment if necessary; regardless of the total costs and the probability of being cured. For some people it will “pay off” because they will receive from the state—in the form of medical services—more than they actually paid as a premium; for some it will not, as they will pay a good deal and no serious disease will affect them. Yet, this is solidarity.
The funding system of health care based on a principle of social solidarity is not the only possible. There are countries in which national (compulsory) health insurances does not exist and everybody is insured on one’s own. Then the matter of receiving medical assistance and its scope depends on the type and the premium of your insurance. This is also a fair approach to the case: when you pay, you get a service; when you pay more, you get a better service; when you do not pay, you die. Everyone can choose: cash today or medical help tomorrow.
Unfair, however, is compulsory taxation under the guise of social solidarity and subsequently the division of taxed into those who will receive the help and those who will not. For our country assures—according to the constitution—medical help to everyone, not only to “the best” or “the cheapest” patients.
From the financial rationality standpoint, refunding the medicines for diabetics is irrational as well, since these medicines only alleviates the symptoms of the disease and do not cure it. Except that there are 150 thousand of diabetics in Lithuania compared to 20(!) suffering from different types of mucopolysaccharidosis. When diabetics take to the streets every government will shake to its foundations and no minister will remain at its position, whereas the pickets of people suffering from mucopolysaccharidosis will not be noticed by anyone. “All animals are equal, but some animals are more equal than others.” Since George Orwell wrote “Animal Farm,” not many things have upturned in terms of national hypocrisy.
Once, at some EU conference, I asked a friend from Denmark: “Why do you accept such horrendous taxes? The Treasury deprives you of majority of the income!” “That’s right”—said the Dane. “But I know what they are allocated for. Taxes covers the costs of a kindergarten for my grandchildren, schools and universities for my children, health care for me and my wife as well as pensions for my parents.”
Therefore, in Nordic countries functions an unwritten social agreement: citizens agree to pay really high taxes and the state assures really high standard of living and clarity of public services. In Lithuania taxes of working people are one of the highest in Europe. Yet, are we, just like Danes, sure that the money is allocated for our needs, since, in order to get a vacant place for a child in kindergarten it has to be registered only before it is born, a pension is too low to pay for the heating, in case of expensive and incurable disease the state may easily refuse to cover the “irrational” costs?…
Tłumaczenie Hanna Hołub w ramach praktyk w Europejskiej Fundacji Praw Człowieka, www.efhr.eu. Translated by Hanna Hołub within the framework of a traineeship programme of the European Foundation of Human Rights, www.efhr.eu.