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28-02-2022

Health insurance funds: increasing focus on treatment of very rare diseases

Iliustracija

The 28th of February is an International Rare Diseases Day. Lithuania, like other advanced European countries, is doing its utmost to show due attention to this particularly sensitive area of health. Each year, the Compulsory Health Insurance Fund (CHIF) allocates more and more funds to reimburse the costs of treatment for very rare human conditions, reports the National Health Insurance Fund (NHIF) under the Ministry of Health.

“Over the last decade, there has been a dramatic change in the way we treat patients with very rare diseases. Efforts are being made to find ways to provide more and more financial resources to help suffering patients. These efforts only confirm once again that we are a mature, developed country, striving to take care of all participants in our health system, without making exceptions even for people suffering from extremely rare, sometimes almost unique diseases”, - says Neringa Norkūnaitė-Sasnauskienė, Deputy Director of the NHIF.

The NHIF organises the activities of the Commission for the Reimbursement of the Costs of Treatment of Very Rare Medical Conditions and, in accordance with its decisions, issues letters of guarantee to medical institutions. Last year, the NHIF issued close to half a thousand such reimbursement letters to 288 patients. Of these, 125 were new patients.

This year, EUR 15.6 million of CHIF funds have been allocated for the treatment of very rare human conditions. This is EUR 5.2 million more than last year.

The bulk of the money goes to ensure the continuity of extremely expensive treatments that have already been started, and to pay for drugs for patients with extremely rare metabolic diseases, spinal muscular atrophy, Duchenne muscular dystrophy and other very rare oncological diseases. In addition, reimbursement for the treatment of new patients with very rare amyloidosis, Devic's disease and other diseases is also expected to start this year.

Analysis by the NHIF shows that funding in this area is increasing each year. While in 2017, the funding for the treatment of very rare human conditions amounted to EUR 4 million, this year the share of funds allocated by the CHIF almost quadrupled.

For more information about rare diseases – click here.

The NHIF invites you:

Your questions are welcome by email [email protected] or phone: local (8 5) 232 2222, international +370 5 232 222

Last updated: 18-03-2022

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