Parents of children with Duchenne muscular dystrophy have issued a new statement, announcing that they will not stop their fight for life-saving medications.
According to the parents, despite certain steps taken by the authorities and the initiative to establish a multidisciplinary team, their main demand remains unchanged: the state must ensure timely funding and the import of modern medicines into the country.
The parents thanked the Locum Tenens of the Catholicos-Patriarch, Metropolitan Shio, for the meeting and expressed hope that the mediation of the Patriarchate would help establish a dialogue with the authorities and speed up the process.
At the same time, they emphasize that the protests will continue until the medicines their children need become available.
“We want to express our hope that, through the mediation of the Patriarchate of Georgia, we will be able to convince the authorities to import modern drugs for the treatment of Duchenne into the country as soon as possible, which are essential to save our children’s lives.
We unequivocally welcome the creation of a state-sponsored multidisciplinary team and the funding of regular examinations for Duchenne patients. It is a pity that this was not done two years ago—perhaps then many severe consequences, including the deaths of several children, could have been avoided.”
The authors of the statement also add that the authorities continue to present modern drugs or supplier companies in a negative light. “In fact, the efficacy and safety of these medicines (referring to four drugs—Elevidys, Exon Skipping Therapy, Givinostat, and Vamorolone) have been confirmed by US and European drug regulators, and they are rapidly spreading across the modern world,” the text reads.
The parents note that market prices for the drugs could change significantly if the state enters into negotiations. A scheme is also possible under which the cost of the medicine is reimbursed upon achieving the corresponding results.
“Unfortunately, Duchenne is a progressive disease that irreversibly destroys our children’s bodies every day. Therefore, we do not have time for a long wait. It is necessary to urgently start negotiations with the drug suppliers.”
The parents promise to hold solo pickets every Wednesday and Friday at 7:00 PM near the residence of the founder of “Georgian Dream,” Bidzina Ivanishvili (since the Ministry of Internal Affairs has banned them in writing from holding protests there). They also intend to organize a “Duchenne March” every Sunday from the Rustaveli metro station to the government chancellery. In addition, they will gather outside the chancellery every Monday.
