Conditions of people with rare diseases in earthquake zones

As of March 13, 2023, 48,448 citizens lost their lives in the great earthquake disaster on February 6, 2023, centered in Kahramanmaraş, with a magnitude of 7.7 and 7.6, affecting 11 provinces. In addition to the loss of tens of thousands of lives in these earthquakes, hundreds of thousands of people were injured and billions of dollars in material losses occurred. It is an undeniable fact that millions of people who have lost their relatives and/or financial means, homes and workplaces, who have been forced to migrate from the earthquake zone, or who are struggling to continue their lives in the earthquake zone due to the earthquake, have experienced great trauma and deep psychological problems. One of the groups affected by the earthquake is the people living in the region who have rare diseases.[1] In this article, I have tried to examine the needs of these people who have rare diseases on the one hand, and who are trying to cope with the severe earthquake conditions on the other, and to summarize the measures taken.

According to the European Union definition, rare diseases are diseases that occur at a frequency of 1 in 2000 or less. According to different sources, there are between 6000 and 8000 rare diseases identified to this day. Rare diseases are mostly progressive, metabolic, chronic diseases, some of which are fatal. Patients need specialized care and treatment, medicines, consumables, special diets and medical devices to sustain their lives.

“Despite the assistance of various organizations, individuals living with rare diseases still have many urgent and important needs that have to be solved.”

Rare diseases are not rare at all when considered collectively and it is estimated that 1 in 17 people in the world have a rare disease. In Turkey, a total of 5 million people are thought to have a rare disease. Considering that the population of the earthquake-affected region is 13.5 million, it is estimated that there are approximately 800 thousand earthquake survivors with rare diseases. [2] We can foresee that approximately 40 thousand of these people have routine treatments and that they have problems in accessing medicines, treatments and devices during the current disaster. It is known that people with rare diseases have various difficulties in meeting their medical needs even under normal conditions. After the earthquake, it is thought that the difficulty in meeting these needs has increased even more. Rare disease associations, the Ministry of Health, the Social Security Institution (SGK) and the Turkish Pharmacists Association (TEB) have announced that they have initiated various activities to help individuals with rare diseases and not leave them alone in the earthquake zone.

After the disaster, the Rare Diseases Network, which reached more than 2000 people in the earthquake zone together with its member associations, in line with the priorities of the patients and their relatives, as well as the delivery of materials that provide basic needs such as tents, heaters, food, blankets, hygiene kits, mobile toilets, It ensured that medicines, medical supplies, generators, wheelchairs, wheelchair generators, low protein food and medical foods, oxygen concentrators, oxygen cylinders and rechargeable aspirators, which are essential for the vital functions and health of individuals with rare diseases, were urgently delivered to those in need. It also evacuated people with rare diseases and their families to safe areas and responded quickly to the transportation needs of patients who needed to be transported by ambulance. [3]

According to the news published in the newspapers on March 2, 2023; the Ministry of Health launched the "Özel Çocuklar Destek Sistemi (Special Children Support System)" application, which provides remote psychological support services. It was announced that support services based on the applied behavior analysis method were started to be provided by volunteer consultants to children with special needs and their families whose behavioral problems increased in this process. It was also stated in the news that earthquake-stricken children in need of psychological support in the earthquake region can also benefit from the system. This system, which allows video calls through an official and secure channel, can be accessed free of charge.[4]

In addition, the SSI made a special definition for pharmacies located in the areas declared as disaster zones in order to facilitate access to medicines in the region. In 11 provinces affected by the earthquake, patients with regular medication reports were granted the right to receive medication without a prescription for one time only. In this way, people who have a chronic disease report and who have obtained medication with the report within the last 3 months will be able to meet their demands for these medicines without a prescription for once. [5]

Countries around the world have not remained insensitive to the great earthquake disaster in our country. The European Organization for Rare Diseases (EURORDIS) shared that following the devastating earthquakes in Turkey and Syria, they contacted their members and several other patient organizations to explore the support they could offer; that many patient groups are working hard to support their communities with basic needs such as food and shelter adapted to their circumstances; and that they are working with Airbnb (an online accommodation platform) to enable patient groups to provide free, temporary accommodation to people living with a rare disease and in need. [6]

“There is a high probability that not all patients are members of associations or the Rare Diseases Network, and that there are patients who have not yet been reached because their contact details are not known.”

Despite the assistance of various organizations, individuals living with rare diseases still have many urgent and important needs that need to be addressed. There is a high probability that there are patients who have not yet been reached because not all patients are members of associations or the Rare Disease Network, or because their contact information is unknown. On the other hand, the individualized nature of medical supplies and medicines in rare patients has made it very difficult for them to reach the patient due to disruptions in procurement and organization. As the houses of patients and their families were heavily damaged or completely destroyed, we can assume that some patients had to interrupt their treatment due to the problems experienced as families were unable to access medical devices and medicines. Due to the destruction or damage to hospitals, physical therapy and rehabilitation centers, guidance and research centers, special education centers in the region, it can be estimated that access to treatment for individuals with rare diseases, early diagnosis of those born during this period within the scope of newborn screening tests, and access to supportive treatments such as physiotherapy, speech therapy, etc. have also been interrupted. In addition to the necessity to improve infrastructure and facilities, there is a need to consider individuals living with rare diseases in aid organizations.[1]

Every person lost in major natural disasters such as earthquakes leaves their loved ones and families behind, and the pain caused by these losses is felt in society. In order to provide the necessary assistance and support for the families of those who lost their lives in the earthquake and for the injured, as well as to compensate for the economic losses caused by the earthquake, it is extremely important to act together as a society, to maintain the sensitivity of the first days of the disaster and to ensure the continuity of solidarity. I share the pain of the families and loved ones of our lost citizens and wish patience to the families and loved ones of those who lost their lives in the earthquake and a quick recovery to those who were injured.

References:

1. https://www.eczagundem.com/a-dan-z-ye-saglik/halk-sagligi/depremin-etkisinde-nadir-hastalar/
2. https://www.nadirhastaliklaragi.org.tr/nadir-hastalik-nedir
3. https://medimagazin.com.tr/guncel/nha-uyelerinden-deprem-bolgesindeki-nadir-hastalarin-ihtiyaclarinayonelik-cagri-104430
4. https://www.politikyol.com/saglik-bakanligindan-depremzedeler-icin-ozel-cocuklar-destek-sistemi/
5. https://www.ntv.com.tr/saglik/deprem-bolgesindeki-kronik-raporlu-hastalar-recetesiz-ilac-alabilecek,qbgCFxLzhk-RyJPHZLnFMg
6. https://twitter.com/eurordis/status/1631699448886591495?cxt=HHwWjoCw8Z2A-6QtAAAA