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Polish law discriminates against children suffering from multiple sclerosis, because treatment of this disease is financed only over the age of 16. – How to tell a 12-year-old sick child to wait two years for treatment – asks prof. Sergiusz Jóźwiak is a national consultant in the field of pediatric neurology.
Poland is a unique place on the European map of multiple sclerosis (MS). Not only is the decision of officials deprived of the possibility of continuing effective treatment after three years, but also only patients aged 16 to 40 can be treated.
Treatment of multiple sclerosis in Poland
When Kasia was 13 years old, she complained that she could see double. The child was admitted to the hospital in the ophthalmology ward. After a week, the ailment resolved and the doctors were unable to establish its cause. After a year, her hands began to go numb. The girl was very weak. The pediatrician referred her to a neurologist who, in turn, referred her to an MRI. The doctor was surprised by the fact that the fourteen-year-old girl had changes characteristic of multiple sclerosis, which are most often diagnosed among patients between the ages of 20 and 40. – The onset of the disease before the age of 16 is found in 5-10% of all MS patients, and before the age of 10 – in 2-5%. Although it is a very rare disease in children, it is the third neurological cause of disability, after cerebral palsy and head injuries, says Prof. Jóźwiak. Meanwhile, Polish regulations deprive children of the possibility of treatment. – The doctor not only has to inform the parent that his child has an incurable disease, but also should inform him that he cannot count on the treatment that stops the progress of the disease available all over the world – he adds. In Poland, a person who hears the diagnosis of “multiple sclerosis” must be ready that – in addition to fighting the disease – will also have to face discriminatory regulations.
Diagnosis and treatment of MS in children
MS is a chronic disease of the central nervous system that causes damage to nerve fibers in the brain and spinal cord, with initially transient, and then permanent, multiple visual, hearing and movement disorders. If left untreated, a patient with relapsing-remitting MS will end up in a wheelchair after an average of 20 years of illness. In a situation where the patient has primary progressive MS, a wheelchair will often be needed as early as six years after diagnosis.
Early diagnosis and prompt treatment initiation have the potential to slow down the progression of MS. However, with children it is quite difficult. The pediatrician usually does not even suspect that it may be MS and treats the child for other diseases. – On average, three years pass from the onset of the first symptoms to the diagnosis, informs prof. Jóźwiak. – Not only is the diagnosis delayed in the case of children, it is also impossible to start treatment – she adds. The monthly cost of the therapy is about PLN 3. zloty . Most parents can’t afford it. Doctors often get involved in finding an alternative way to finance therapy. – Whenever we are diagnosed with MS in a person under the age of sixteen, we must find sponsors and donors who support patients individually and donate funds for treatment. The role of the doctor is not to organize the treatment financing system. We have to deal with the medical aspects – outraged prof. Jóźwiak.
Immunomodulating drugs
For many years, there have been drugs that can significantly slow down the development of the disease. These are the so-called immunomodulating preparations. According to available studies, treatment leads to an approximately 30% reduction in the number of relapses. Such a reduction means not only an improvement in the quality of life, but also a postponement of permanent deterioration in health associated with relapses and the resulting disability. Published data suggest that the safety of MS medications in children and adolescents 12 to 16 years of age is similar to that in adults. These drugs are registered by the manufacturer from the age of 12. However, the NHF has been financing the therapy since the age of 16. – The current lower age limit used when qualifying patients for therapy requires modification. There are no medical contraindications to treat even twelve-year-old patients as standard. – believes the national consultant in the field of pediatric neurology. He also adds that the early implementation of treatment allows the disability to be delayed. A 22-year-old who is left untreated will end up in a wheelchair at the age of XNUMX. Early disability and incapacity to work will hinder or even prevent the education necessary for social functioning, leading to the exclusion of people affected by the disease from social life.
Multiple Sclerosis Treatment Cost
Doctors emphasize that it just doesn’t pay off if you don’t treat MS or stop it after three years.
The therapy avoids the costs of hospitalization and treatment due to relapses. In addition, the costs associated with rehabilitation and symptomatic treatment in the periods between relapses are reduced. Extending the period of being able to function, and thus being active in the labor market, means that the sick pay the premiums for health insurance and do not receive any disability benefits. Savings also apply to people from the immediate family of the sick – who will not be forced to quit their job and devote all their time and attention only to the sick person. Monthly, these savings certainly exceed the 30-day cost of therapy, which is PLN 3. zloty.
Access to healthcare services
The Polish Multiple Sclerosis Society recalls, pursuant to Art. 68 sec. 2 of the Constitution of the Republic of Poland, citizens should be ensured equal access to healthcare services financed from public funds. Limiting the availability of treatment to selected groups of patients is a violation of the cited criterion, unjustifiably depriving or limiting access to the necessary therapies. The unavailability of treatment under the public health service for children under 16 years of age – despite the medical justification for its implementation – should be considered contrary to Art. 68 sec. 3 of the Constitution, which imposes an obligation on public authorities to provide children with special healthcare. This requirement should be understood as an order that public authorities demonstrate special diligence in ensuring the widest possible access to minors to treatment adequate for a given disease.
Natalizumab in MS
On March 30, 2011, during a press briefing, Adam Fronczak, Undersecretary of State at the Ministry of Health, announced that the ministry had approved two therapeutic programs for patients with MS. The first concerns immunomodulatory therapy and modification of the current rules. The point criteria limiting access to treatment after 40 and before 16 years of age are to be abolished, while the duration of therapy is extended from 36 to 60 months. The second program concerns the possibility of using a monoclonal antibody called natalizumab as a second-line drug. Both programs have yet to be assessed by the Consultative Board of the Health Technology Assessment Agency, on which subsequent decisions depend. If the AOTM issues a positive opinion, the ministry will initiate talks with the National Health Fund regarding the implementation of programs to be implemented. Before this happens, however, the children will be left untreated.
Text: Halina Pilonis