2:44pm , Tuesday 22nd January 2019

Hadeel Fayiz Al-Tawallbeh - Swallow the Pain

December 27, 2018

I chose the idea of investigative inquiry upon browsing news media websites. I came across a published interview with the president of The Jordanian Rare Storage Disease Society, Engineer (“Eng.”) Imad Al-Momani, which states that there are people, in various age groups, with rare heredity diseases and are subject to death due to the absence of the necessary treatment (i.e., enzyme substitution). This is in light of the shortcomings of the concerned parties, from The Ministry of Health and the Government, to provide the treatment given its high cost.

What stopped me at the beginning of the matter was the subject of rare heredity diseases that I have not heard off before. It also appeared to me that a good number of people did not hear of rare heredity diseases, such as, Pompe, Joshua, and Mucus Polysaccharides. This was noticed during discussions with friends and family, whom had no knowledge about the existence of such diseases. From there, the first steps of the investigation began, by collecting sufficient information about what constitutes these diseases, its causes, and symptoms. After which, I began to collect data and statistics related to the cases affected by these diseases in Jordan. Accordingly, I reached out to The Jordanian Rare Storage Disease Society and The Jordanian Association for Joshua Patients Care.

Later, it appeared that there is no national registry, which includes the number of cases affected with rare heredity diseases, at the Ministry of Health, given that each official party, such as the Ministry of Health, Al-Hussein Medical Center, and associations regarding these diseases, store the number of patients that follow-up with it [independently]. Moreover, several affected cases, after suffering for a long period of time with [rare heredity] diseases, die as a result of not taking the substitutional enzyme for their body. If taken consistently, the substitutional enzyme improves the condition of the affected cases and reduces the appearance of symptoms.


What caught my attention during my interviews with the affected cases and their families, was that regardless of their ill-health conditions their smile did not leave their faces and I felt the renewed hope of their families at the possibility of facilitating the medication, in the event of their suffering and messages reaching the related parties. As mentioned, they have knocked on every door to try to ensure provision of the required treatment; however, without avail. This smile that encapsulates the pain and renewed hope gave me a strong motivation to continue with the course of the investigation and try my hardest to finish it and communicate their voices. Therefore, every step I took in the investigation was a growing responsibility; not a concern but a fear of breaking the spark that I saw in the eyes of the families of the affected cases, whom have continuously reached out to me, as I was writing these lines, via phone calls or WhatsApp to inquire and ask: “What happened with the investigation? Is there any hope for the provision of the treatment?”


During the investigation, the ARIJ methodology was followed at every phase of the investigation, starting with the hypothesis, collecting and documenting official documents and information, conducting interviews with all parties to the investigation, and ending with confronting the parties responsible for this setback (i.e., confrontation phase). At the beginning, one of the difficulties encountered in completing the investigation was the lack of prompt cooperation of some of the sources. This led to delays in the completion of the investigation, apart from conducting interviews between the governorates of the Kingdom (the city of Irbid, Jerash, Ajloun, Salt, Amman, and Al-Zarqa). Furthermore, the confrontation phase required some additional time to obtain the requested information, related to the investigation, by the Ministry of Health.

 

The guidance of the instructors – Hamad Al-Othman and Imad Omar – assisted in all aspects of the investigation. Their directions played a great role in filling the gaps in all the parts of the investigation and ensured achieving a full-fledged investigation outcome, based on sound foundations and methodology.

 

This is my first piece of work in the world of investigative journalism. It was a great experience, which I did not go through during my work in the traditional journalism field. Despite the physical and psychological strains on the journalist, it has been proven to me that at the end of the path the truth will not die and it will find its way to the light. As long as there are those seeking to find it.