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28-02-2023

The health insurance funds: every life matters

Iliustracija

The story of young Milana’s fight against a serious illness, which has raised a lot of interest and goodwill, has drawn public attention to rare diseases and their treatments that have been overlooked until now. It also brought attention to the funding of this field and to the challenges faced every day by people with very rare diseases, their relatives and the institutions that are constantly trying to find ways to help suffering patients. The International Rare Diseases Day celebrated on 28 February reminds us all how precious every life is and that every effort must be made to preserve them.

February this year began with the amazing news that the long-awaited EUR 2 million medicine for a rare condition - spinal muscular atrophy - has been reimbursed to a one-and-a-half-year-old girl named Milana and her family. After persistent negotiations involving representatives of the National Health Insurance Fund (NHIF) under the Ministry of Health, a significant discount was agreed with the manufacturer of the vital medicine for Milana, doubling the amount of money from the Compulsory Health Insurance Fund (CHIF) for the girl. This significantly reduced the shortfall in the amount to be donated by Milana's charity and support fund.

“The work of the Negotiating Commission has not ended there. Negotiations have already started with the pharmaceutical manufacturer for another very expensive and long-awaited cystic fibrosis medicine, which has not been reimbursed until now. Another patient is also patiently waiting for the outcome of the negotiations on a medicine for lipodystrophy. Since this year, the Negotiating Commission has been mediating negotiations with manufacturers on medicines in all cases where the cost of treating a patient with a medicine exceeds EUR 100,000 per year. The aim is to use CHIF funds more efficiently so that other patients can get the expensive treatment they need”, says Neringa Norkūnaitė-Sasnauskienė, Deputy Director of the NHIF, who is participating in the negotiations.

NHIF organizes the work of the Commission for the Reimbursement of the Costs of Treatment of Very Rare Conditions and, in accordance with its decisions, issues letters of indemnity according to which the costs of treatment of very rare conditions are reimbursed for medical institutions. Last year, the NHIF issued more than 500 indemnity letters for the reimbursement of treatment costs for 316 patients. Of these, 113 were new patients.

Funding for very rare conditions is increasing every year; in the last seven years, it has increased five times. This year, EUR 20.53 million has been allocated for the reimbursement of medical aids and medicines for very rare diseases, i.e., nearly EUR 5 million more than last year. The efforts to find ways to provide more financial resources to help patients with near-unitary diseases are a sign of the country's progress as well as ambition to take care of all members in the health system without any exceptions.

The largest part of the funding concerns the continuation of extremely expensive treatment that has already been started, and to pay for medicines used to treat patients with very rare metabolic diseases, spinal muscular atrophy, Duchenne muscular dystrophy, and other very rare oncological diseases. Last year, reimbursements were started for the treatment of new patients with a very rare form of amyloidosis, neuromyelitis optica, also known as Devic's disease, and other diseases.  

The NHIF points out that a very rare health condition is considered to be one that is diagnosed in a year as no more than to 1 person per 200 000 residents of Lithuania. These conditions cause significant permanent disability or even pose a threat to life, but it is, by means of effective treatment, possible to reduce patient's disability and prolong their life.

More information on very rare human health conditions can be found here.

(Freepik photo)

The NHIF invites you:

Your questions are welcome by email[email protected]or phone: local (8 5) 232 2222, international +370 5 232 2222

Last updated: 10-03-2023

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