All children should have equal access to medicines

Speaking at the VIIth Traditional Child Neuromuscular Diseases Congress of Child Neurologists of Turkey held in Avanos district of Nevşehir, Prof. Dr. Haluk Aydın Topaloğlu said, “All children in Turkey should be provided equal access to medicines. Other individual solutions are incomplete.”

In the congress organized by the VIIth Neuromuscular Diseases Congress Organizing Committee and Neuromuscular Diseases Research Association and attended by 126 guest researchers from Turkey and 1 from England, topics such as muscular dystrophies, spinal muscular atrophy, metabolic diseases, neurogenetic diseases, myopathies, physiotherapy principles were reviewed in detail. As every year, molecular therapies, namely gene and exon therapies, were also discussed in long sessions.

VII: Neuromuscular Diseases Congress Organizing Committee, Prof. Dr. Haluk Aydın Topaloğlu said, “We would like to share a point that we attach importance to as the common opinion of researchers who have been devoted to childhood neuromuscular diseases for many years, who follow each new treatment closely with excitement and approve it when there is strong scientific evidence: We invite all drug manufacturers who have developed modern therapies and are currently claiming their validity to apply to the health authorities of our country with large unpublished data, long-term follow-up and articles published in serious medical journals and to enter the process of trying to obtain a license. Only in this way will all our children have equal access to medicines. Other individual solutions are incomplete.”

İlker Karcı, spokesperson for the DMD Families Association, said, “The Scientific Committee to be appointed by the Ministry of Health should examine all drug data developed for DMD in detail and determine effective and safe treatment options. Pharmaceutical companies should enable an objective decision-making process with the data they will present. These treatments should be made available to all patients who will benefit, under state guarantee, without delay. Aid campaigns are not the solution. We cannot reach a fair solution with individual methods.”