SMA Workshop Report published: 'Problems are not limited to access to medication'

Şenol Çarık-12punto.com.tr

Istanbul Bar Association Health Law Center Spokesperson Attorney Çağrı Uluslu pointed out that patients who have to receive treatment for SMA are trying to access medication through their own means, and stated that while a governor's office permit is sufficient to start the campaign process organized by patients' relatives, requesting approval from the Ministry of Health leads to delays in the start of these campaigns.

Pointing out that patients who are currently able to receive this treatment are experiencing technical and bureaucratic problems and stating that these problems must be resolved urgently, Uluslu said, "The problems experienced are not only in terms of access to medication. Patients also need to receive sufficient physical therapy services during the treatment process. The state must absolutely allocate resources."

The report of the "SMA WORKSHOP," organized by the Istanbul Bar Association Health Law Center on June 15-16, 2023, with the participation and support of experts in the field, has been published.

By compiling the papers presented at the workshop and the report prepared at the end of the workshop into a book by the Istanbul Bar Association, a permanent reference source has been created for lawyers working in the field of health law.

Attorney Çağrı Uluslu

Istanbul Bar Association Health Law Center Spokesperson Attorney Çağrı Uluslu made statements to 12punto writer Şenol Çarık regarding the SMA Workshop and the workshop book, which is the first of its kind in its field.

Uluslu noted that this work, which contains the outputs of the SMA Workshop and for which the foreword was written by Istanbul Bar Association President Attorney Filiz Saraç, will be forwarded to all political parties in the Grand National Assembly of Turkey (TBMM) in order to ensure that every individual with SMA has equal and easy access to treatment. Uluslu emphasized that they will follow up on all necessary efforts for the state to fulfill its positive obligations.

Uluslu stated the following:

'FOR OUR VOICE TO BE HEARD...'

The increase in donation campaigns seen in Turkey, the requests from our colleagues to announce donation campaigns (for themselves and/or their relatives), and the fact that the regulations made regarding SMA treatment in recent times have not been clearly understood by our society were the factors that triggered our idea of holding a workshop. Furthermore, as the Istanbul Bar Association Health Law Center, we held the SMA Workshop on June 15-16, 2023, in order to ensure our voice is heard within the scope of the state's positive obligation regarding the right to life and health, which is a constitutional right, and to establish the legal foundations and regulations while the state fulfills this obligation.

Experienced academics in their fields contributed their efforts to our workshop: Prof. Dr. Zehreddin Aslan, Prof. Dr. Gürkan Sert, Prof. Dr. Osman Korkut Kanadoğlu, Prof. Dr. Ersin Yarış, Assoc. Prof. Dr. Arzu Arslan Ertürk, Lecturer Dr. Cihan Yüzbaşıoğlu, Dr. Özkan Özdemir, lawyers in the field; Attorney Rüya Akçay and Attorney İdil Kahraman, and Pharmacist Bilge Çakıroğlu.

DIFFICULTIES EXPERIENCED BY INDIVIDUALS WITH SMA IN REACHING TREATMENT AND MEDICATION...

In our workshop, which holds the distinction of being the first workshop in the Republic of Turkey where the subject of SMA was discussed in such a multifaceted way, topics such as what SMA disease is, reimbursement procedures for medication, administrative regulations, difficulties experienced by individuals with SMA in accessing treatment and medication within the scope of the Social Security Institution (SGK), campaign processes/post-campaign, the ethical dimension of the processes, and international application examples were discussed.

'MINISTRY OF HEALTH APPROVAL LEADS TO DELAYS'

While a governor's office permit is sufficient to start the campaign process, requesting approval from the Ministry of Health leads to delays in the start of campaigns. Patients who are currently able to receive this treatment still experience technical and bureaucratic problems. These problems must be resolved urgently.

The problems experienced are not only in terms of access to medication. Patients also need to receive sufficient physical therapy services during the treatment process. The state must absolutely allocate resources.

'THE PUBLIC IS NOT INFORMED CORRECTLY!'

One of the important issues we noticed at our workshop is that the public is not correctly informed about SMA treatment, and therefore there is an unconscious reaction to donation campaigns and the perception that the only problem of individuals with SMA is access to medication. Specifically, while an individual with SMA who has accessed the medication experiences certain difficulties because they cannot receive the necessary physical therapy services or obtain the necessary medical equipment (wheelchair, crutches, etc.), our public perceives the only problem of individuals with SMA as not being able to access the medication abroad.

'WE CONTINUE OUR WORK'

As the Istanbul Bar Association Health Law Center, we plan to hold an event every month; we had an event in February in cooperation with the Turkish Liver Foundation. Together with our Health Law Center executive board members, we plan to hold events every month that will be useful to our colleagues in the field of health law.

'EQUAL AND EASY TREATMENT MUST BE PROVIDED TO EVERY INDIVIDUAL'

The right to a healthy life is among the most fundamental human rights. In terms of the social state concept, governments must fulfill their constitutional obligations and ensure that every individual has equal and easy access to treatment. As the Istanbul Bar Association Health Law Center, led by our esteemed president Attorney Filiz Saraç, we will continue to follow up on these and similar rights violations at every stage."