Monopoly in medicine: why is there only one doctor in Ukraine who deals with patients with epidermolysis bullosa?

Monopoly in medicine: why is there only one doctor in Ukraine who deals with patients with epidermolysis bullosa?

Kyiv  •  UNN

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In Ukraine, all issues related to the treatment of patients with epidermolysis bullosa are concentrated in the hands of one doctor. The Swedish company Molnlycke Health Care has monopolized the market for medical dressings for these patients.

Patients with epidermolysis bullosa, a severe genetic disorder that makes the skin extremely vulnerable to any physical impact, face numerous challenges. They have to fight an incurable disease for the rest of their lives  and face systemic deficiencies in the medical sector that leave these patients without proper access to qualified care. All the responsibility for the treatment of "butterfly people" in Ukraine is concentrated in the hands of one doctor, which creates a dangerous monopoly and indicates the shortcomings of the system, but this does not seem to bother the Ministry of Health, writes UNN.

Why only one doctor?

All issues related to the treatment of patients with epidermolysis bullosa in Ukraine are concentrated in the hands of one specialist, Dr. Inna Gedeon. She not only counsels patients, but also handles all the key processes: from diagnosis to treatment selection. Moreover, Gedeon is a member of the commission that determines the standards for procuring medicines for such patients. In other words, one person influences all aspects of care, from policy to practical medicine.

The difficulty of accessing proper medical care lies in the fact that special dressings that do not stick to the skin are needed to treat the wounds of "butterfly people." They need to be replaced by a dermatologist every 1-3 days. Patients with bullous epidermolysis, who currently number more than 300 in Ukraine, are scattered throughout the country, and those who do not live in the capital, where Inna Gedeon sees patients, have to look for dermatologists who do not treat bullous epidermolysis who can help them in other hospitals.

This situation, despite the obvious risks, does not cause any concern for the Ministry of Health. The Ministry of Health not only does not initiate training of new specialists, but also does not create conditions for attracting other doctors to this field. Thus, butterfly people remain extremely vulnerable, because if Gideon is absent or unavailable, no one else will be able to provide them with qualified assistance.

The rights of butterfly people are ignored: what is happening in the market of dressings for patients with epidermolysis bullosa10.01.25, 16:49 • 153433 views

Artificial monopoly on the bandage market

The difficult situation in the market for dressings for patients with epidermolysis bullosa adds even more challenges. The fact that the name of the Swedish manufacturer Molnlycke Health Care was directly included in the medical documentation created an artificial monopoly. Other manufacturers do not have access to this market, and the Ministry of Health has not revised the standards for more than five years.

According to the current adapted clinical guideline, the document was supposed to be revised in 2019. This is a mandatory requirement, as medical standards must take into account the latest technologies and patient needs. However, for unknown reasons, no changes have been made so far. This not only violates the regulations, but also makes it difficult for other manufacturers to enter the market. A logical question arises: why is the commission that deals with this documentation ignoring its direct responsibilities? This clearly hints at a corruption trail.

Swedish bandages, although of high quality, are extremely expensive. The state is forced to purchase them at significant prices, without being able to attract alternatives of the same quality, but many times cheaper. This creates an additional financial burden for the medical system, while patients suffer from a lack of access to the necessary materials.

Molnlycke Health Care and “Orphan Diseases of Ukraine”: a monopoly supported by public unions02.01.25, 18:48 • 199410 views

Why does the Ministry of Health ignore the problem?

Despite the obvious risks, the Ministry of Health remains aloof from this problem. Not only does the Ministry of Health not initiate a revision of the guidelines, but it also does not create transparent conditions for attracting alternative bandage suppliers. Moreover, the ministry is not even trying to solve the problem of market monopolization or training of new specialists who could work with patients and tell them about the emergence of new high-quality wound care products.

The concentration of all responsibility for the fate of patients in the hands of one person is particularly dangerous. This creates risks not only for the patients themselves, but also for the entire healthcare system, as dependence on one specialist can lead to serious consequences if he or she is unavailable or plays along with one manufacturer.

To avoid a crisis, the commission should update medical documentation, ensuring transparency and openness of the market. It is necessary to attract more manufacturers who could provide quality at a more affordable price.

In addition, the Ministry of Health should address the problem  of the shortage of doctors who can treat patients with epidermolysis bullosa, as well as control all aspects of patient treatment to avoid corruption risks.

The situation with patients suffering from epidermolysis bullosa demonstrates the deep systemic problems in the medical field of Ukraine concerning orphan patients. Ignoring the revision of the guidelines, monopolization of the bandage market, and concentration of responsibility for treatment in the hands of one doctor endanger the lives and health of butterfly people. The Ministry of Health should take responsibility for solving this problem by ensuring that patients have decent treatment conditions and equal access to medical care.

Ministry of Health may change the guidelines for the treatment of butterfly people - Lyashko09.01.25, 16:57 • 26983 views

Add

Earlier, UNN received information indicating that the Swedish company Molnlycke Health Care, which holds a monopoly position in the Ukrainian market of medical dressings for patients with epidermolysis bullosa, may be involved in financing the public union "Orphan Diseases of Ukraine", headed by Tetiana Kulesha. The union has actually become the mouthpiece  of the company, helping to maintain Molnlycke's monopoly on the medical dressings market in Ukraine and lobbying for its interests.

In his public speeches, Kulesha constantly emphasizes that there is no alternative to Swedish bandages and defends Molnlycke products, despite the availability of high-quality and cheaper analogues that are successfully used in other countries.

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

Former Minister of Health Zoryana Skaletska emphasizedthat the Ministry of Health must look into the situation and do everything necessary to ensure the interests of patients. She emphasized that orphan diseases require special attention, because due to the rarity of these diseases, government agencies may not have enough information to respond quickly.

Recall

UNN launched an investigation to find out how Molnlycke Health Care, a Swedish company specializing in the production of dressings, managed to create a monopoly in the Ukrainian market. After all, the manufacturer has secured absolute dominance in public tenders for the purchase of wound care products for patients with epidermolysis bullosa. For example, they are trying to prevent a Ukrainian manufacturer from entering the market, which offers the same super-thin dressings, but at four times the price. A previous analysis revealed a possible conflict of interest in tender procurement through the public association headed by Tetiana Kulesha. In particular, there are reasonable suspicions that Molnlycke Health Care uses  Kulesha to lobby for its own bandages.

For reference: Epidermolysis bullosa is a rare genetic disorder that makes the skin extremely fragile. Such patients are also called butterfly people. Even a slight mechanical impact can cause blisters, open wounds and scars on their skin. This disorder affects not only the skin but also the 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.