On 21.10.2020, a meeting of problems and resolution proposals for ALS patients was organized online by the General Directorate of Disability and Elderly Services.

Meeting of problems and solution proposals for ALS patients; zoom application on 21.10.2020.  The meeting was held with the participation of Dr. Orhan KOÇ, General Manager of Disability and Elderly Services, Deputy General Managers Faik YILDIRIM and Hülya YAVUZ, Department Head Hulusi Armağan YILDIRIM, Department of Rare Diseases, Department of Medicines Department of The Ministry of Health, Department of Medicines department of the Social Security Institution and Department of Health Services Abroad, Turkish Pharmacists Association, ALS Association and Muscle Diseases Association representatives and ALS patients and their relatives.

General Manager of Disability and Elderly Services Dr. Orhan KOÇ, Amyotrophic Lateral Sclerosis (ALS) disease occurs with damage and loss of nerve cells that control involuntary muscle movements in the brain and spinal cord, ALS paralyzes the nervous system by killing most of the motor cells (neurons), but does not affect the mental activities of the brain much, he said, adding that ALS, popularly referred to as "Muscle melting", can decommunicate all muscles in the body over time, causing sound loss. ALS patients and those with neurological diseases, every bed-dependent patient and their relatives are given support to cling to life, he added.

Following Dr. Orhan KOÇ's opening speech, Prof. Dr. Hilmi UYSAL, Faculty Member of Akdeniz University Department of Neurology and President of Antalya Branch of ALS Association, and Dr. Alper KAYA, Vice President of ALS Association and ALS patient, gave a presentation and explained the problems experienced by ALS patients.

SSI payments are inadequacy at the online meeting, all of the vital support devices and services are paid within the scope of the SSI, there are many criteria for the preparation of respiratory device prescription difficulties in the preparation of the device usage report, the disruption of treatment due to the inability of the drug used for ALS to be available on the market, multi-disciplinary ALS clinic is needed, patients and their relatives should be supported financially and psycho-socially.

In addition, reliable and up-to-date information about the disease is needed, the number of medical personnel working on ALS should be increased, home care services are lacking, home care services diversification and changing the income criterion for home care assistance for ALS patients, facilitating the retirement process, equality of opportunity in education for children of ALS patients, increasing the number of palliative care patient beds were raised.

The issues of taking ALS disease into the scope of terminal illness, establishing a separate organizational scheme for ALS Patients ranging from transplant to treatment, home care, supporting funds for the investigation of the disease, not being on the list of influenza vaccines of ALS patients, employment opportunities, development of auxiliary communication technologies for ALS patients, VAT exemption related to pharmaceutical medical devices and consumables were discussed. Representatives of the relevant public institutions expressed their views on the solution proposals and stated that new approaches are important in resolving the issues raised at the meeting and that they will consider the work and regulations they will do next.