Patients with rare diseases were relieved after the Law on Compulsory Health Insurance was adopted at the end of last year and the article that previously denied them the right to receive appropriate therapy was reinstated.
The problems they face, however, do not end there, and the National Organization for Rare Diseases of Montenegro (NORBCG) told "Vijesta" that the most urgent thing is the establishment of a registry.
"At the moment, we very often receive inquiries regarding the calculation of sick leave and there we have a problem again, and the root of the problem is the lack of a register. We in the Association think that this is currently a pressing problem, because with the existence of the register, all rights from the law could be realized much more easily. This is how we have a situation where we fight for each diagnosis individually, because the system does not recognize codes without a register", they told "Vijesti" from that organization, adding that their activities in the coming period "will probably be directed in that direction".
Establishing a registry is not a new topic and the issue is raised every year anew. By establishing a registry, it would also be known how many patients in Montenegro have any of the diagnoses.
The Center for Genetics and Immunology of the Clinical Center (KC) previously stated that around five percent of people in the world suffer from rare diseases at some point in their lives, that the percentage of diseases in Montenegro is not statistically exactly known, and that the establishment of a registry would contribute to this.
They also said that Montenegro is not alone in this, but that other countries are also facing the same challenge.
After two years, the right to therapy was restored
For two years, people with rare diseases were deprived of the right to therapy, since the article of the Law on Mandatory Health Insurance concerning free treatment was deleted in December 2019.
At the end of December last year, a new law was passed. It states in Article 22 that "The Ministry must approve the use of a drug outside the List of Medicines for an insured person, on the proposal of a council of doctors of appropriate specialties of the KCCG or the Special Hospital for Lung Diseases 'Dr. Jovan Bulajić', based on the opinion of the KC Council for the approval of medicines and on the basis of medical documentation, in accordance with the available means for the treatment of rare diseases and the continuation of the therapy prescribed during the treatment of the insured person abroad, referred for treatment in accordance with this law".
"The return of this article has brought a great relief to our patients, because now they can legally receive appropriate therapy, and not have to deal with it in various ways. So we can proudly say that last year was very tiring, but successful", said NORBCG.
Rijekbolesti.com database
More than a year ago, the regional rare disease database rijetkebolesti.com was presented to the public in Montenegro and neighboring countries, with data on over 4.000 diagnoses, downloaded and translated from the European portal Orfanet.
The database consists of two parts - an electronic catalog of rare diseases with a search engine and a closed forum for patients and doctors. An invitation is also open to doctors in the region to contribute and get involved in the further development of this service. The NORBCG previously pointed out that the response from Montenegro was bad, and that has not changed even to this day.
"When we talk about the database of rare diseases, I regret to say that Montenegro is not active, which is a pity, because in one place you can easily find the right and appropriate information. On the site there is an option for networking patients and for networking doctors, they are completely separate, whatever diagnosis a patient is given, he can first look for information in the database, because patients from all countries of the region are networking, it is good for exchanging experiences, because everyone we know that rare diseases are a completely unexplored area, except for some established diagnoses, and there are very few of them", said the NGO.
Since 2008, International Rare Disease Day has been celebrated every year on the last day of February.
This year, NORBCG joined the global campaign, which takes place under the motto #LightUpForRare and aims to raise awareness and provide solidarity to people suffering from a rare disease, their families and caregivers, health workers, researchers, clinicians, industry representatives and the general public.
Awaiting diagnosis
The term "rare diseases" refers to a wide and heterogeneous group of diseases, which are mostly of genetic or congenital origin, progressive chronic, polysystemic manifestation. Rare diseases have a very low frequency in the general population. A rare disease is defined as a disease that occurs in less than five people per 10.000 inhabitants. Within the group of rare diseases, there are also those that are "very rare" and affect one person per 100.000 inhabitants or even less.
One of the biggest problems for patients and their families is that they wander from diagnosis to therapy, which is extremely scarce. The Center for Genetics and Immunology of the KC previously said that the percentage of patients in Montenegro is the same as in Europe. They also said that according to a study by the European Organization for Rare Diseases (EURODIS), the average waiting time for a diagnosis is 4,8 years, but also that 25 percent of patients wait for a diagnosis from five to 30 years...
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