Middle East CF Association (MECFA): Impact Overview
The mission of the Middle East CF Association (MECFA) is to improve health outcomes and life expectancy of patients with Cystic fibrosis (pwCF) in the Middle East, North Africa, and Central Asia. Over the next decade, MECFA’s primary focus will be on CF patients aged 0-18, who are vulnerable to early morbidity due to lack of adequate care, diagnostics, and essential therapies.
Palestine CF Patients
MECFA’s key objectives are to equip the greatest possible number of hospitals with diagnostic equipment and testing supplies, provide specialized clinical training, support CF Center development and facilitate open access to essential CF therapies to all patients in our regions of operation.
The organizing principles of [our] plan are three-fold:
1: Early and Accurate Diagnosis
2: Training of Clinicians and Allied Health Professionals
3: Access to Essential Therapies
Early and Accurate Diagnosis:
Treating pwCF with symptom-management and disease-modifying therapies as early as possible is crucial to ensuring patients live longer lives with improved quality of life, making early detection of disease crucial. Governments, hospitals, and clinicians will not be able to focus on pwCF without robust epidemiology and consequent impact on morbidity and resource utilization.
MECFA donates diagnostic equipment and testing supplies and establishes agreements with the Ministry of Health (MoH) and hospital administrations to continue to offer free diagnostic services, maintain the donated equipment and budget for testing supplies. We also continue to enroll hospitals participating in our diagnostics program in an ongoing research study of the CF epidemiology in MECFA member countries. This program is a partnership with Prof. Milan Macek (Charles University, Prague, Czech Republic) and is funded by Vertex Pharmaceuticals.
Training of Clinicians and Allied Health Professionals:
Can you use a still shot from the online training we are doing?
Adequate treatment of pwCF require extensive multidisciplinary clinical and holistic care with a team of trained professionals at an accredited, specialized care facility—such facilities and training have not historically been available in many countries in the Middle East, North Africa, and Central Asia due to the dearth of robust CF epidemiology, resources, clinician and patient disease education.
Through successful pilot programs, MECFA has optimized a method to train hospital pulmonologists and allied health professionals to establish CF care teams and develop CF Centers following US CF Standards of Care. This process includes partnering with the CF Foundation’s Centers of Excellence and the local health ministries, hospital administration and pulmonology departments. The method was developed in collaboration with the CF Foundation using quality improvement training that translates to directly impacting patients’ BMI, lung function and overall health status.
Access to Essential Therapies:
People with CF are unable to thrive without access to a short list of basic medications, including airway clearance, enzymes, nutritional supplements, and inhaled antibiotics. With newly developed cystic fibrosis transmembrane conductance regulator (CFTR) modulator drugs targeting mutations in the CFTR protein, up to 90% of patients can benefit greatly enhancing their health outcomes.
MECFA works to facilitate drug access through advocacy and innovative mechanisms for lower costs and sustainable supply/distribution channels. We approach health ministries as a partner invested in government health systems through our ongoing diagnostic donations and clinical training programs. This symbiotic relationship with local Ministries and hospitals is key to securing patient access to essential therapies.
In our next article, we’ll go into further detail about MECFA’s impact to date.