MECFA 2021 Impact Statement
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. 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:
EARLY AND ACCURATE DIAGNOSIS: Treating pwCF with symptom-management and disease-modifying therapies as early as possible is crucial to ensuring they 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’s Role: 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.
MECFA’S Impact To-Date: MECFA has donated 10 Iontophoresis units, 10 sweat chloride analysers, and supplies for 10,000 tests to hospitals in Egypt, Jordan, Sudan, Azerbaijan, and Ethiopia. All hospitals and CF teams enrolled in this program are currently participating in diagnostic training being led by Dr. Susanna McColley funded by the CF Foundation. Future countries approved for diagnostic donations include Armenia, Georgia, Uzbekistan, Kyrgyzstan, Pakistan, Tunisia, Palestine, Algeria, and Morocco.
TRAINING OF CLINICIANS AND ALLIED HEALTH PROFESSIONALS: Adequate treatment of pwCF require extensive multi-disciplinary 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.
MECFA’s Role: Through successful pilot programs, MECFA has optimized on 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.
MECFA’S Impact To-Date: MECFA established the MaMi Project, a pilot feasibility program collaboration between the Marmara CF Center (Istanbul) and the Mott CF Center (Michigan) aimed to implement US-standard, multi-disciplinary CF Center in Istanbul, Turkey. This project established a care center able to manage all clinical aspects of patients with CF, following best evidence-based care guidelines and adapting them to the Turkish setting. MaMi trained a multidisciplinary expert CF Team based in Turkey under direct and continuous supervision of the University of Michigan (UM) CF Center, and the CF Foundation. The program focused on quality improvement (QI) projects, including: improving BMI, improving pulmonary function testing, and implementing Infection Prevention and Control (IP&C) in the center. Marmara CF Center is now qualified to train clinicians and allied health teams in Turkey and surrounding countries following the MaMi projects principles. Within the first year of the program, pwCF treated at the Marmara CF Center saw significant improvement in their health outcomes*.
The MaMi program provided a successful methodology that MECFA are currently implementing between the following institutions.
• Boston Children’s Hospital and Brigham and Women’s Hospital (BCH/BWH) CF Center in Boston, Harvard Medical School, USA and Caritas Baby Hospital CF Center in Bethlehem, Palestine
• University of MI, Mott CF Center, USA and 5 University Hospitals in Egypt
• Sidra CF Center, Qatar and El Sewedy Pediatric Charity Hospital, Sudan
• Marmara CF Center, Turkey and King Abdullah University Hospital CF Center, Jordan
• Marmara CF Center, Turkey and 2 hospitals in Azerbaijan
ACCESS TO ESSENTIAL THERAPIES: PwCF 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’s Role: MECFA is working to facilitate drug access via 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.
MECFA’s Impact To-Date: MECFA has established an Advocacy Committee The MECFA Advocacy Program aims to leverage both internal and external resources (e.g., MECFA Advocacy Committee, MECFA member clinicians, patients and families, and consultants) to pursue a broad awareness and advocacy campaign to elevate the needs of patients and ultimately garner support from policymakers to include CF care in their annual budgets. In addition to advocacy on behalf of patients, MECFA also offers solutions to the high costs of CF drugs through the MECFA Access Program, (MAP). The goal is to ensure CF patients in MENA region have affordable access to specialized CF care and essential therapies that will extend their lives.