Strictly by appointment: how charity fundraising for treatment is regulated in Belarus

Making charitable aid transparent, fair and ensuring that it reaches the recipient is the main task of Presidential Decree No. 304 “On Foundations and Charitable Activities in Healthcare”, which came into force on September 12. The need for such a document is obvious: recently several unpleasant stories have become public, when the amounts collected allegedly for treatment were spent on completely different things. The legislation is clear and clear. For those who worked transparently, nothing has changed, but to speculate on the health of children will not work.

Lyudmila Terebovets with her daughter Lisa. Photo by Jyzze Palesia. Charity collections can now only be organized by patients themselves or their close relatives, profile funds and public associations, medical and social institutions. Any person or organization can help. Bloggers and other outsiders are directly prohibited from collecting money to personal accounts - they can only informationally support fees. A person may open no more than one charity account for each purpose. As before, it is possible to transfer money through mobile operators. All funds collected in this way from the operator’s balance sheet will be transferred daily to the recipient’s charitable account.

A common requirement for all is reporting: each ruble must go where it is intended. The funds can be spent exclusively on medical care, medicines, medical devices, as well as on the travel and accommodation of the patient and his accompanying person. Limits are also controlled: if the amount collected exceeds the stated amount, the surplus will be used to help others in need. According to First Deputy Minister of Justice Natalia Filippova, the legislative act is designed to create a transparent legal framework for charitable fundraising and its targeted use by a person in need of assistance:

- The main goal is not to harm, not to worsen the legal situation of both people who need help and those who want to help. There are no legal obstacles to organizing fundraising, including opening charity accounts. Within two months, state bodies will take organizational, technical and practical measures aimed at implementing all the provisions of the decree. Since 2023, the RSPC “Mother and Child” has opened a special centralized charity account to raise funds for the treatment of children with spinal muscular atrophy. All incoming donations are directed to the purchase and implementation of expensive gene replacement therapy. Since the beginning of 2021, about 20 children with spinal muscular atrophy have received expensive treatment, including 14 people with the funds of a charitable account in the RSPC “Mother and Child”.

Recently, the collection for another child was completed: the injection in the RSPC “Mother and Child” was also received by Mozyrian Lisa Terebovets. The girl is now six. She walks, has become much stronger, hardy, walks on the street, attends kindergarten. Previously, I could not lift an object from the floor without support, on any uneven place - a stone or a bump - fell. Now the girl is preparing for school, enjoys drawing and collecting puzzles.

- Lisa developed as an ordinary child, but from eight months she stopped gaining weight, - shared her mother Lyudmila. - Gastroenterologist prescribed mixtures and adjusted nutrition, but the situation did not change. Gradually, I began to notice that my daughter was weakening, the movements were getting heavier.

Parents thought that the reason is low weight and possible metabolic disorders. And when in Gomel, Lisa was tested for a genetic disease, experts suggested checking for neuromuscular disorders. The analysis was positive. Lyudmila recalls that at that moment "the earth went out from under my feet." She first heard about SMA, looked for information, saw the cost of treatment and understood the scale of the struggle ahead.

- The daughter received supportive therapy, in parallel organized a collection for the necessary drug zolgensma, shared Lyudmila. The amount was huge: $1,815,000. But it was assembled. We opened a bank account, actively developed social networks, published posts, addressed the media, organizations and foundations. A lot of people responded. Thus, the daughter was saved. Thank you for that to all concerned people! I am convinced that the President’s decree will increase trust in charitable collections, and more people will respond, because they are now convinced that the funds are spent expediently, and not on the beautiful life of various bloggers. DIRECT Speech

Natalia Makhanko, Head of the Chance Foundation:

- Charity collection should be as transparent as possible, it encourages more people to help those in need of treatment. It is important that the movement and targeted use of the collected money will be monitored by the regulatory authorities.

basikirskaya@sb.by