Prompt updating of medical records will allow to inform patients about new international recommendations - NGO “Athena. Women Against Cancer”

Prompt updating of medical records will allow to inform patients about new international recommendations - NGO “Athena. Women Against Cancer”

Kyiv  •  UNN

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Prompt updating of medical records will allow informing patients about the emergence of new international recommendations, according to the Athena. Women Against Cancer”.

The issue of promptly updating medical guidelines and treatment protocols is long overdue. This will allow informing patients about the emergence of new international recommendations. This opinion was expressed in an exclusive commentary to UNN by the Vice President of the NGO "Athena. Women Against Cancer" Victoria Romaniuk.

Context

Medical protocols in Ukraine need to be constantly updated to meet modern international treatment standards. The current legislation provides for their review every five years, but progressive developments need to be implemented faster. Valeriy Zub, a member of the Verkhovna Rada Committee on National Health, Medical Assistance and Medical Insurance, told UNN that the committee is working to develop a mechanism for dynamically updating national protocols to adapt to new evidence-based treatments and changes in international medical practice.

Details

"In fact, this is very important, because after all, science is moving forward and international recommendations are constantly being updated. In Ukraine, it is allowed to use international protocols, but many protocols for the treatment of cancer are also already available and approved by the SEC (State Expert Center). Sometimes it happens that quite drastic changes are made to the (international - ed.) recommendations," Romaniuk said.

She added that medicines that have already been approved by protocols are not always available to Ukrainian patients. "But it still helps to inform the patient, and the patient already decides what to do next, whether to be treated at their own expense or perhaps consider treatment abroad if this option is already available abroad. That is why it is mega-important," said Romaniuk.

According to her, there are many patients with advanced stages who live in anticipation of the next line of treatment. That is, they have undergone one line of treatment - progression, then the second, and so they are actively watching the emergence of new protocols, new studies that are being conducted, because new drugs are constantly appearing.

"The only other problem is that our protocols and industry standards for oncology have been under development for quite some time. Some have been ready for a long time, and some have not been finalized for a long time. Therefore, it also depends on the experts of these interdisciplinary working groups, how active they are. There are those who say they are ready to update and make changes that have taken place. And some, unfortunately, cannot yet complete the work on the protocols, which has been going on for years," emphasized Romaniuk.

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She added that there are currently no proper methods of quality control of medical care in Ukraine, which affects patients' rights. "There are no quality control methods. The quality control of medical care needs to be improved and influenced somehow. Now it is difficult," said Romaniuk, adding that patients' rights are now being defended by public organizations, including the NGO "Athena. Women Against Cancer".

In addition, in her opinion, there should be a high-quality system of punishment for actions that have harmed patients, as well as a system of medical licenses.

Add

Valeriy Zub, a member of the Verkhovna Rada's relevant committee, said that, for example, there are some protocols for cancer treatment that have been in effect since 2007 and 2015. Another example of outdated medical documentation is the guidelines and protocols for the treatment of epidermolysis bullosa.

Back in 2016, a special commission approved an adapted clinical guideline that recommends using only products from the Swedish company Molnlycke Health Care to treat butterfly wounds. This document was based on recommendations and findings collected in 2012. It was supposed to be revised in 2019, but this did not happen. The Commission has not updated its recommendations for more than five years, despite the latest experience of international colleagues, which suggests that there are corrupt motives for its inaction. In 2017, this guideline formed the basis of a medical protocol for the treatment of patients with epidermolysis bullosa. In this way, "butterfly people" in Ukraine were deprived of the right to choose medical products for wound treatment, as no analogues to Swedish dressings were specified in the documentation.

The 2021 European Consensus on Practice Guidelines for the Treatment of Epidermolysis Bullosa published by the European Academy of Dermatology and Venereology advises doctors to use an individualized approach in the treatment of "butterfly people". "The choice of wound treatment strategy should take into account efficacy, patient preference, and cost-effectiveness," the document says. 

The economic feasibility is particularly related to the fact that patients with epidermolysis bullosa have to use many wound dressings throughout their lives, and some manufacturers, such as Molnlycke Health Care, are very expensive. 

At the same time, European doctors in the guideline specified a number of manufacturers of dressings that can be used to treat the wounds of patients with epidermolysis bullosa. That is, they allow patients to choose the medication that suits them best. Moreover, the Europeans advise doctors to use gauze if it is not possible to use specialized dressings. The 2024 clinical practice guideline for the treatment of epidermolysis bullosa neonatorum, published in the British Journal of Dermatology, suggests a similar approach to preventing skin injury in diapered children.

However, in Ukraine, international recommendations are ignored and they stubbornly say that only Swedish dressings can be used for patients with bullous epidermolysis.

Recall

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.