On European Day, parents of cystic fibrosis patients will demand fair access to effective medicines and responsibility at the Saeima… – Health, beauty

Parents of cystic fibrosis patients will demand fair access to effective medicines and responsibility for their children’s lives at the Saeima on Europe Day. On Europe Day on May 9, parents of patients with the rare disease cystic fibrosis (CF) will gather at the Saeima to demand compliance with regulations and equal treatment for all CF patients who, according to the compensable medicine system, are entitled to, but have not been granted, the most effective medicines in 2024, which prolong patient survival and saves lives.

Parents of CF patients want to ask parliamentarians on Europe Day whether it is important for Latvia to use the potential that every person, every child and young person can bring to our country. In order to live longer, should CF patients access the medicines they need through donations, or should they look for options in other European countries?

On April 30, the Cabinet of Ministers approved the informational report of the Ministry of Health “On ensuring the improvement of the availability of compensable medicines for 2024 and the following years”, which does not grant funding for the latest generation of drugs for 16 cystic fibrosis patients, even though the drugs are included in the system of compensable drugs and the patients meet all the conditions. prescribed by the National Health Service for receiving the medication. Under these conditions, any CF patient at least 6 years old with at least one can receive the drug F508 del mutation, if this most effective innovative drug has been prescribed by a board of doctors. However, a management-approved briefing paper refuses to continue treating children with cystic fibrosis with the most effective drug without finding funding for it.

The struggle of parents is for access to reimbursable drugs according to the established diagnosis to create long-term health benefits and improve overall well-being. “For children and young people with cystic fibrosis, every day counts as they live with this ever-progressing disease. The better their health is maintained, the longer their lives will be. In our country, children’s right to a dignified and quality life must be respected just like in other European countries! Last year, state institutions were late and reluctantly registered medicines, this year they are putting obstacles in their way. Do you want to deprive our children of a future at all?” asks Voldemārs Belinskis, board member of the Latvian Cystic Fibrosis Society (LCFB), organizer of the parents’ action at the Saeima.

LCFB board chairperson Alla Belinska says that both the association and some of its members have written to all possible state institutions to fight for funding – letters were written to both the Ministry of Health and Saeima commissions. However, the answers to them have not been received.

“Last year, we organized the exhibition “With an eye on the future” in the Saeima House, and it was said that it is very important for the deputies that we send signals about the situation in the field of CF. We, the parents, send these signals restlessly, and this time, during the meeting at the Saeima, we finally want to ask, do not Latvia need these children and young people? We are fighting for Latvian children’s right to life! No country in the European Union understands such a situation that the medicine is available, but patients are prevented from receiving it, even though it has been prescribed by the medical council,” says Alla Belinsky.

Cystic fibrosis (CF) is one of the most common rare diseases, and in Latvia this diagnosis has been confirmed in slightly more than 50 patients. The majority of CF patients are young – children, teenagers and young people, who, receiving appropriate treatment and medical care, can make a significant contribution to the future and development of Latvia. On the other hand, when medicines are missing, the disease has a negative impact on all organs, the quality of life and survival are significantly reduced.

Cystic Fibrosis Society