Due to the increase in subsidies for the most effective dressings, patients with blistering epidermal detachment will have to give up on them at the cost of great pain or they will start to fall into poverty – doctors and representatives of patients alerted in an interview with PAP.
They estimated that the expenses of patients with epidermal epidermis epidermolysis (EB for short) on the necessary dressings may increase from several hundred zlotys to even several thousand zlotys per month. Meanwhile, in families with EB, usually one person leaves work to be able to look after a sick child, while adult patients often do not work due to disability. Therefore, they cannot afford such subsidies – emphasized in an interview with PAP the chairman of the board of the EB Polska Foundation, Dr. Agnieszka Sobczyńska-Tomaszewska, whose son suffers from this disease.
The EB Polska Foundation and the Debra Polska Kruchy Dotyk Association, representing patients with EB, sent a letter to the Minister of Health on this matter.
I do not understand why the health department wants to save on a small group – about 500 people – with a rare, serious disease that makes them struggle with pain and suffering from birth. For them, these dressings are the basic method of therapy, told PAP Dr. n. med. Marek Kucharzewski from the Chair and Department of Correct and Topographic Anatomy of the Medical University of Silesia.
The term epidermis blistering is a group of rare, genetically determined diseases, the common feature of which are disorders in the connection of the epidermis with the dermis. As a result, people with EB have an extremely delicate and vulnerable epidermis. Even a small trauma, which in a healthy person causes, for example, a slight scratching, in a patient with EB leads to the detachment of a large area of the epidermis from the dermis. Open wounds are formed, and patients still have to wear dressings – explained Dr. Sobczyńska-Tomaszewska, who is also a diagnostic geneticist.
In patients with the most severe form of the disease, even 70 percent. the surface of the body is covered with wounds. An example is the 7-year-old Zuzia Macheta, whose story has recently spread over social media, as her family raises funds for an experimental therapy abroad with the use of stem cells. Blisters and wounds cover three-quarters of the girl’s body surface. in the intestines and esophagus. Due to the scars, its esophagus is so narrow that it is necessary to feed with a tube inserted into the stomach. Her fingers also fused together. The disease is similar in many patients with EB, posing a threat to their lives.
Regardless of the form of EB, patients are constantly in pain from birth. The natural delivery itself and the usual procedures performed after the baby is born are a source of enormous suffering for babies suffering from this condition. It hurts in the morning, during the day, at night, while eating, sitting, walking, sleeping – Zuzia’s mother wrote on her daughter’s website “Świat butterfly” (http://www.zuziamacheta.com/pl/).
For this reason, children with EB are often referred to as the children of Job, but even more often as butterfly children. Their skin is as delicate as a butterfly’s wings and therefore they cannot even be hugged, because it causes them great pain.
In patients with EB, ordinary dressings cannot be used, because when changing them, they will tear off very delicate epidermis and create more wounds. It is necessary to use dressings covered with a hydrophobic silicone layer that does not stick to wounds or heavily greased (waxed) tulle ‘- explained Dr. Kucharzewski. Not only does this reduce the risk of complications, it reduces pain, but – as the analyzes show – it is cost-effective, the specialist added.
Meanwhile, from March 1, subsidies to the best dressings meeting these criteria, recommended by international societies dealing with EB treatment, have changed, noted Dr. Kucharzewski. As a result, in order to be able to continue using them, patients and their families have to spend several hundred or even several thousand zlotys a month.
Replacing the dressings that worked for a child with EB with other dressings may worsen his health, additional complications, wound infections and pain, so parents cannot decide to do so, noted Dr. Sobczyńska-Tomaszewska.
The answer of the spokesman for the Ministry of Health, Krzysztof Bąk, to the PAP’s question about the reasons for the increase in subsidies, shows that it was related to the principle of determining the basis for the subsidy limit. Currently, this is done taking into account the quantitative turnover of dressings. In other words, the limit is set by the highest wholesale price of the top-selling dressings.
The problem is that dressings for patients with EB are in the limit group together with dressings that are more often purchased by more numerous groups of patients, e.g. with a diabetic foot. However, they do not meet the needs of people with EB, and often they cannot be used at all, because they lead to a deterioration of health – explained Dr. Sobczyńska-Tomaszewska.
In their letter to the minister of health, the representatives of the sick wrote that for people chronically ill with rare diseases, the amount of subsidies should be frozen at a level that in the long run will not cause a significant financial burden on the families of patients, and therefore will not lead to extreme poverty and discrimination. social. According to Dr. Kucharzewski, it would be best to create a separate group of dressings reimbursed only for patients with EB, it would include four types of dressings.
The spokesman for the Ministry of Health, in his reply sent to PAP, emphasized, however, that due to the applicable legal regulations and the established affiliation of individual products to limit groups, it is currently not possible to make changes to the financing limits.
He also noted that the minister of health received comments from patients regarding the increase in fees for dressings, which was unfavorable for patients with EB.
The ministry has taken steps to establish the substantive factual state, wrote Bąk. If the ministry deems it necessary to make changes that will reduce patient fees for these dressings, “it will be possible to carry them out later under the applicable law,” the spokesman of the Ministry of Health reserved.