Recently, a rally of orphan patients and their families took place in Kyiv. They demanded the provision of special bandages for people with a rare disease called epidermolysis bullosa. At first glance, the situation seems simple: the state must provide patients with quality care. However, a preliminary analysis by UNN revealed that there is a whole scheme behind this problem that can be beneficial to a narrow circle of people and that works thanks to one person.
During the market analysis, it turned out that the state procures bandages exclusively from one manufacturer, a Swedish company. Although there are other options on the market that are much cheaper, they are not procured. Why is this so? The reason may be hidden in the tender conditions, which effectively exclude any competition. The terms of reference set out specifications that perfectly match the characteristics of the products of one particular brand.
This calls into question the transparency of tenders. In addition, the question arises: are the interests of patients taken into account if the price per unit of product is inflated several times?
Studying the process of preparing tender documents, we found that one person plays a key role in this process. According to our information, this person not only develops the terms of reference, but is also related to the public union “Orphan Diseases of Ukraine”. This union represents the interests of patients with epidermolysis bullosa, among other things, but at the same time actively promotes the use of Swedish-made dressings. Other manufacturers are not even considered.
Conflict of interest or systemic corruption
The connection between the public union and a foreign manufacturer is particularly noteworthy. According to our sources, the association receives funding from a company that represents the interests of this manufacturer in Ukraine. It turns out that the organization, which is supposed to be an advocate for patients, is actually working to promote one commercial entity.
This creates a vicious circle: patients are told that there is no alternative, tenders are written for one manufacturer, and patients are forced to depend on products whose price seems unreasonable.
The main question is: why does the state allow such a monopoly to exist? If there are alternatives on the market that are not inferior in quality, why are they not considered? And do patients really get the best, or have they become hostages to the financial interests of a narrow circle of people?
UNN journalists continue their investigation. We will appeal to the Ministry of Health and other relevant authorities to explain why the tenders are conducted in this way. We also plan to get comments from independent medical experts and representatives of alternative suppliers.
We intend to follow this case to the end to find out whose interests are behind public procurement and whether the situation can be changed in favor of patients. Follow the updates, because the truth must be heard.
For reference
Epidermolysis bullosa is a rare genetic disorder that makes the skin extremely fragile. Even a slight mechanical impact can cause blisters, open wounds, and scars. This disorder affects not only the skin but also nails, hair, and mucous membranes. Treatment includes special wound care, the use of protective dressings, drug therapy, and surgery in severe cases. Due to the significant impact on patients' quality of life, ensuring access to the necessary care is critical.