For over five years, the commission has neglected its duty to review medical documentation, leaving patients with bullous epidermolysis trapped by a monopoly.

The situation regarding the provision of patients with a rare genetic condition - bullous epidermolysis - raises serious concerns. The adapted clinical guidelines approved in 2016 were supposed to undergo a mandatory review in 2019, but this has yet to occur. The documentation mentions only one manufacturer of wound care products for butterfly patients - the Swedish company Molnlycke Health Care. This creates an artificial monopoly, excluding other manufacturers from state tenders, reports UNN.

According to international standards and regulations, medical documentation should be regularly updated to reflect new developments, the availability of alternative products, and changes in market conditions. However, the situation with the supply of dressings for patients with bullous epidermolysis indicates that there are instances where patients become captives of a large company's desire to monopolize the market for excessive profits.

UNN initiated an investigation into the situation on the Ukrainian market, revealing that an artificial monopoly has been established for the Swedish company Molnlycke Health Care. In 2016, a multidisciplinary working group developed adaptable clinical guidelines for the treatment and care of wounds in patients with bullous epidermolysis. This document was based on recommendations from 2012.

It was in the guidelines that the working group stated that for wounds, butterfly patients could use exclusively Molnlycke Health Care dressings. No alternatives were offered to patients. Based on this document, the Ministry of Health approved a protocol for the treatment of butterfly patients, which also specified that only Swedish dressings could be used for their wound care.

At the same time, the guidelines contain an important point, according to which the commission was to review this document no later than 2019.

"The presented adapted clinical guidelines must be reviewed no later than 2019 by a multidisciplinary working group involving the chief freelance specialist of the Ministry of Health of Ukraine, practicing physicians providing primary and secondary medical care, scientists, health care organizers, representatives of public organizations interested in improving the quality of medical care, and others," the guidelines state.

Thus, the working group members likely attempted to prevent the creation of a monopoly position for Molnlycke Health Care, as they understood that alternatives to Swedish dressings would certainly emerge in the market before 2019, which indeed happened.

However, the commission has not reviewed the relevant guidelines for over 5 years, raising suspicions of corruption in this matter. As a result, while the commission delays the review of the medical documentation, other manufacturing companies, apart from Molnlycke Health Care, cannot participate in state tenders.

This situation adversely affects not only patients who cannot choose other products but also the state budget. Due to the market monopoly, purchases of wound care products are conducted at inflated prices.

Additionally

Previously, UNN received information indicating that the Swedish company Molnlycke Health Care, which holds a monopoly position in the Ukrainian market for medical dressings for patients with bullous epidermolysis, may be involved in funding the public union "Orphan Diseases of Ukraine," led by Tatyana Kulesha. The union has effectively become a mouthpiece for the company, helping to maintain Molnlycke's monopoly in the Ukrainian medical dressing market and lobbying for its interests.

In her public statements, Kulesha consistently emphasizes that there are no alternatives to Swedish dressings and defends Molnlycke's products despite the existence of quality and cheaper alternatives that are successfully used in other countries.

Experts interviewed by UNN note that the situation surrounding Molnlycke Health Care exhibits clear signs of a conflict of interest and a corrupt component. At the same time, attempts by other manufacturers to offer alternative dressings for state tenders are blocked due to the influence of "Orphan Diseases of Ukraine" and its leader.

Former Minister of Health Zoryana Skalecka noted that the Ministry of Health must thoroughly investigate the situation and do everything necessary to protect patient interests. She emphasized that orphan diseases require special attention, as the rarity of these conditions may leave state authorities with insufficient information for prompt response.

Recall

UNN initiated an investigation to determine how the Swedish company Molnlycke Health Care, specializing in the production of dressings, managed to establish a monopoly in the Ukrainian market. The manufacturer has secured unquestionable dominance in state tenders for purchasing wound care products for patients with bullous epidermolysis. For instance, efforts are being made to prevent the entry of a Ukrainian producer, offering similarly ultra-thin dressings, but at four times lower prices. Preliminary analysis has specifically revealed a potential conflict of interest in tender procurements through the public union led by Tatyana Kulesha. There are reasonable suspicions that Molnlycke Health Care uses Kulesha to lobby for its own connections.

Reference: Bullous epidermolysis is a rare genetic condition that makes the skin extremely fragile. Such patients are often referred to as butterfly people. Even minor mechanical impacts can lead to the formation of blisters, open wounds, and scars on their skin. This disorder affects not only the skin but also nails, hair, and mucous membranes. Treatment includes specialized wound care, the use of protective dressings, medication therapy, and surgical intervention in severe cases. Due to the significant impact on patients' quality of life, ensuring access to necessary care products is critically important. Currently, there are over 300 such patients in Ukraine.