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Idiopathic Pulmonary Fibrosis Identified As Priority for 2016 Among Rare Diseases

A special press conference was dedicated to World Week of Idiopathic Pulmonary Fibrosis (IPF). The meeting was organized under the aegis of IPF Patients Union, Association of Respirators of Georgia and the Georgian Fund of Genetic and Rare Diseases.

Kakha Vacharadze (Association of Respirators of Georgia), Ana Boqolishvili (Georgian Fund of Genetic and Rare Diseases) and Elena Samkharadze (Union of IPF Patients) made speeches at the press conference. The event was also attended by members of the Parliamentary Committee on Healthcare and Social Issues, representatives of the Organization for Rare Diseases and Respirators, physicians, patients, supporters and the other invitees.

The outreach campaign started on October 15, last year, on the day when the Union of IPF Patients was established and continues so far. It aims to raise public awareness about the disease, make early diagnostics and right management possible, ensure access of IPF patients to anti-fibrosis therapy and provide them with support.

 “For us as patients nothing has changed during this one year, currently we are working with the Ministry and Healthcare Committee. We made some good steps, though all patients and I are expecting the first outcome by the year-end. We are talking about patients’ lives and there are families behind them” – said Elena Samkharadze, the Head of the IPF Patients’ Union.

A Group working on IPF problem during the last one year consisting of experts, doctors and patients developed algorithms for disease diagnostics and treatment. The list of patients was made who immediately need treatment with anti-fibrosis medicines. In addition, it is important that NGOs identified IPF as a priority for the year 2016 among rare diseases.

“We are expecting funding and support from the Government. We raised this issue in the Ministry of Health as well as in the Parliamentary Committee for Healthcare. All regulations and guidelines were met from the medical perspective. For a commission, where the IPF is diagnosed through a concilium procedure, the number of patients is established and we are waiting only for funding to start the treatment.

If this is not achieved at the first and the second stage, their treatment at the 3rd and 4th stages will not produce effect. Therefore, every day, hour and a minute are important. The number of patients is low. Respectively allocation of funding should not represent a problem. The public, doctors and patients are waiting for it”, – said Kakha Vacharadze, a representative of the Association of Respirators of Georgia.

This year, IPF World Week occurred from 17 to 25 September. Georgia joined this “Breath of Hope” initiative in 2015 and implemented several activities within the framework of IPF outreach campaign with participation of media, government agencies, companies, organizations and individuals. Blowing soap bubbles was an essential attribute of the event which became the symbol of IPF.

About Idiopathic Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a progressive, irreversible chronic disease of the lungs, which is distinguished by a higher rate of lethal outcome than majority of tumors. Difficulty in diagnosis because of non-specific symptoms and rapid deterioration in some patients means that many people live only about 2 to 5 years after diagnosis.

Half of IPF patients is not diagnosed and half is incorrectly diagnosed. Early diagnostics and adequate treatment are the keys for the disease outcome. Until 2011 permitted IPF therapy did not exist. Currently anti-fibrosis medicines were provided for IPF treatment, which reduce disease progression by 43% while the mortality by 49%.

However, according to international figures 60% of diagnosed patients does not receive adequate treatment, which complicates their position and increases lethality. There is no statistics kept in Georgia about the disease, though presumably the situation is even harder. That is why the IPF outreach campaign aims to improve diagnostics and ensure access to IPF treatment in Georgia, after which the mortality will almost halve, the life quality will get significantly improved and what is the most important, the patients will start breathing with hope.