Patients suffering from rare diseases will require EUR 30 million this year

Treatment of patients suffering from rare diseases will require and additional amount of funding equal to EUR 30 million in Latvia this year, according to the head of Rare Diseases Coordination Centre Ieva Mālniece.

When compared to the general population, rare diseases only affect a small number of people. In Europe and USA a disease is considered rare if it affects no more than one out of 2,000 people.

Last year, funding of EUR 4.5 million was allocated in Latvia to finance treatment for patients suffering from rare diseases. This funding was used to procure medicines, disease treatment services, as well as laboratory tests.

According to Mālniece, currently there are 2,568 patients registered with the centre. Unfortunately, only 18 patients receive active treatment. Three more patients will start their treatment this week.

The costs of treatment for these patients are very high because the cost of one medicine to combat a rare disease can reach EUR 800,000 per patient, says Healthcare Ministry’s representative Inese Kaupere.

She said the ministry has submitted a request for EUR 30 million to the state budget for this initiative. However, this matter has yet to be viewed in association with the 2019 budget’s context. Because of that, there is simply no funding to afford treatment of such a large number of patients.

One of the most expensive medicines that are not compensated for children in Latvia at the moment is Spinraza, which is used to treat spinal muscle atrophy. Inga Cepurīte, a board member of Latvian Spinal Muscle Atrophy Association, says in 2017 this disease was untreatable. However, with Spinraza, there is a way to at least slow down progression of this disease.

Cepurīte notes that spinal atrophy surfaces in children in the form of progressing muscle weakness. According to her, Spinraza is the only medicine to help halt spinal muscle atrophy. Unfortunately, this medicine is very expensive. At the same time, if therapy is not started, the disease continues progressing, which eventually starts affecting the child’s organs. Cepurīte says 20 Latvian families have relocated to foreign countries to gain access to this medicine. Spinraza is a compensated medicine in Lithuania, adds Cepurīte.

During a meeting of the Saeima’s sub-committee, deputies voiced the desire to resolve this problem. For example, Saeima deputy Aldis Gobzems said funding should be found. «The state administration should consider every child as their own,» said Gobzems.

Deputy Regīna Ločmele-Luņova said she is shocked children are not provided with sufficient assistance and medicine. She asked the ministry and cetre’s employees to explain why it is unable to help children.

Healthcare Ministry’s representative notes that provision of assistance largely depends on presence of funding, especially considering medicines are usually very expensive.

The head of Saeima’s public health sub-committee Vitālijs Orlovs said further solutions should be discussed by Saeima’s Social and Employment Affairs Committee.

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