Minister of Health Firas Hawari has expressed the ministry’s dedication to tackling the challenges and hindrances facing cystic fibrosis patients in Jordan. Through comprehensive treatment plans and careful monitoring, the Ministry of Health aims to mitigate the disease’s symptoms, minimize complications, enhance patient lifespan, and uplift their quality of life, despite the absence of a definitive cure so far, he said. These remarks were made during an educational event sponsored by the minister on Sunday, intended for families of patients. The event focused on effective patient care and was coordinated by the Middle East Cystic Fibrosis Association, in collaboration with the Jordan Cystic Fibrosis Friends Charity?. Hawari underscored the necessity of fostering community engagement and promoting knowledge exchange at local and regional levels. The ultimate goal is to equip patient families with the tools they need to manage the disease, encompassing infection control, physiotherapy, nutritional guidelines, and the pathway to specialized health services. The ministry has set up both a national and a technical steering committee to oversee patient care. The National Committee, comprising distinguished healthcare professionals from the Ministry of Health, Jordanian universities, the Royal Medical Services, and the private sector, has initiated a national registry to track the disease’s prevalence, patient demographics, treatment locations, and requisite treatments, ensuring ongoing and suitable services. Hawari emphasized the forthcoming electronic platform to guarantee the continuous operation and data updating of the National Cystic Fibrosis Registry. This will be undertaken in cooperation with the Improving Health System Quality project, funded by the US Agency for International Development. The Health Minister assured that the Ministry is using all available resources to provide healthcare services to all, leaving no stone unturned to source necessary medications and advanced diagnostic methods for detecting the disease and its genetic variants, in association with the Saudi Food and Drug Administration and numerous international agencies. Hawari acknowledged that the ministry equipped hospitals with lung function testing devices approximately a year ago, thanks to a joint grant. These devices are instrumental in diagnosing and tracking the disease’s progression, and in assessing treatment effectiveness. The ministry also organized training for technical personnel to operate these devices, in partnership with a project to enhance health service quality. Remarkably, the Ministry of Health launched lung function labs in the north, center, and south of the Kingdom in five governmental hospitals about a year ago. These labs buttress treatment centers established by the Ministry in three of them, staffed with dedicated teams specializing in the disease. A specialized cystic fibrosis medical team arrived in Amman from the United States as part of a volunteer medical mission, aiming to share and acquire knowledge to augment the quality of healthcare for affected individuals. The visiting delegation, consisting of pulmonary and digestive disease experts, nurses, physiotherapists, nutritionists, and psychologists from top-tier American hospitals and medical centers, will stay for roughly a week. Their visit marks a joint effort between the Middle East Cystic Fibrosis Association and the Cystic Fibrosis Foundation in the United States. The American medical team is eager to boost medical capacities in Jordan and enhance patient care via collaborative training sessions, seminars, and workshops at various Jordanian health facilities. This partnership envisions the establishment of a robust network of cystic fibrosis centers across the Kingdom. The aim is to deliver healthcare that amalgamates resources and expertise to effect significant advancements in patient care, thereby positively impacting individuals and families battling the disease. The visiting medical team expressed a keen interest in working hand-in-hand with their Jordanian counterparts, emphasizing the necessity of persistent efforts and collaborative work to elevate healthcare standards in this domain.
Source: Jordan News Agency